tag:blogger.com,1999:blog-1226116539582037652024-03-08T02:03:46.199-08:00HAYDEN'S HOPEDedicated to raising awareness and research funds for a rare bone disease called F.O.P.(Fibrodysplasia Ossificans Progressiva).Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.comBlogger110125tag:blogger.com,1999:blog-122611653958203765.post-69777128180306308312024-02-29T09:23:00.000-08:002024-02-29T09:23:28.706-08:00Rare Disease Day 2024<p> <b style="color: #333333; font-family: georgia, serif; text-align: center;"><span face=""arial" , sans-serif" style="color: #222222;">rare</span></b><span style="color: #222222; font-family: georgia, serif; text-align: center;">/re(ə)r/</span><span style="color: #222222; font-family: georgia, serif; text-align: center;"> </span><span style="color: #333333; font-family: georgia, serif; text-align: center;">Adjective</span></p><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt; text-align: center;"><span face=""arial" , sans-serif">1.) marked by unusual quality, merit or appeal, distinctive<o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt; text-align: center;"><span face=""arial" , sans-serif">2.) seldom occurring or found uncommonly<o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt; text-align: center;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt; text-align: center;"><span face=""arial" , sans-serif">Typically when we think of something as rare, <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt; text-align: center;"><span face=""arial" , sans-serif">we think of something special, <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt; text-align: center;"><span face=""arial" , sans-serif">unique or hard to come by.<o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt; text-align: center;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt; text-align: center;"><span face=""arial" , sans-serif">Something spectacular such as the Hope Diamond,<span style="font-size: small;"><o:p></o:p></span></span></div><div class="separator" style="clear: both; color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFOAFB0JmC5HzO-FJgkfISrNMaSS8CRwwkc7McIN8YNStFcD2VL8Ce7cji_Plz2xmBqaCiSwLRU9ggtdZzLQ0zyg_JiWJw7hbkQeIxYd7TVTTMK0HyFFgkS7F67Kq3h8lR6aNzKX0vOX4/s1600/hope+diamond.jpg" style="color: #999999; margin-left: 1em; margin-right: 1em; text-decoration-line: none;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFOAFB0JmC5HzO-FJgkfISrNMaSS8CRwwkc7McIN8YNStFcD2VL8Ce7cji_Plz2xmBqaCiSwLRU9ggtdZzLQ0zyg_JiWJw7hbkQeIxYd7TVTTMK0HyFFgkS7F67Kq3h8lR6aNzKX0vOX4/s1600/hope+diamond.jpg" style="border: 1px solid rgb(204, 204, 204); padding: 4px;" /></a></div><div style="color: #333333; font-family: georgia, serif; line-height: 20.8px; text-align: center;"><span style="font-size: x-small;"><br /></span> <span face=""arial" , sans-serif">or discovering long, lost ancient ruins</span></div><div class="separator" style="clear: both; color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_IngR-vZoZewRERgJJl3T0AZiK4rXnV6Lk-Qii8Svlf9JGvq_k8jgidJU3gsPiyA9kYjmdEbSDIJAif6dmT3iT3sn3Vdwj3nrF4EnNaVvxnXcxWyfP7d8Ccxnxs67lb3DQPGH_FrX03I/s1600/camels+and+pyramids.jpg" style="color: #999999; margin-left: 1em; margin-right: 1em; text-decoration-line: none;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_IngR-vZoZewRERgJJl3T0AZiK4rXnV6Lk-Qii8Svlf9JGvq_k8jgidJU3gsPiyA9kYjmdEbSDIJAif6dmT3iT3sn3Vdwj3nrF4EnNaVvxnXcxWyfP7d8Ccxnxs67lb3DQPGH_FrX03I/s1600/camels+and+pyramids.jpg" style="border: 1px solid rgb(204, 204, 204); padding: 4px;" /></a></div><div class="separator" style="clear: both; color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; text-align: center;"><br /></div><div class="separator" style="clear: both; color: #333333; font-family: georgia, serif; line-height: 20.8px; text-align: center;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">or even a fossilized sand dollar </span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">such as the one I found recently on the beach.</span></div><div class="separator" style="clear: both; color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0iNym-CuYovAPj8sIKexmbFjmsHo_5nkHEYUFkDt0Zhy7BoZHmHwMDG1PDboT2M-L82LM1hzlJ7zrqKORCdc1gIk1x6VS1t3gt629xKp6Jou-mt4eIk1TAqWzq5CjlePulVfugcP6WVM/s1600/Sand+Dollar+Fossil.JPG" style="color: #999999; margin-left: 1em; margin-right: 1em; text-decoration-line: none;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0iNym-CuYovAPj8sIKexmbFjmsHo_5nkHEYUFkDt0Zhy7BoZHmHwMDG1PDboT2M-L82LM1hzlJ7zrqKORCdc1gIk1x6VS1t3gt629xKp6Jou-mt4eIk1TAqWzq5CjlePulVfugcP6WVM/s320/Sand+Dollar+Fossil.JPG" style="border: 1px solid rgb(204, 204, 204); padding: 4px;" width="240" /></a></div><br style="color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px;" /><div class="separator" style="clear: both; color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; text-align: center;"><br /></div><div class="MsoNormal" style="color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; margin-bottom: 0pt; text-align: center;"></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">Rarely, no pun intended, do we like to associate </span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">the word "rare" with an illness.</span><span face=""arial" , sans-serif"> </span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">However there is nothing spectacular about </span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">receiving a diagnosis of a rare disease. <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">It is, in a word, devastating.<o:p></o:p></span></div><div align="center" class="MsoNormal" style="font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif" style="color: #3d85c6;"><b>FOP is a rare disease.</b></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">Less than 5% of rare diseases have </span><br /><span face=""arial" , sans-serif">any therapies or treatments.<o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;">And 70% of genetic rare diseases </div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;">like FOP start in childhood</div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">There are over 6,000 identified rare diseases with no cures.<o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">300 million people have a rare disease. <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">That is <b>more</b> than all those with </span><br /><span face=""arial" , sans-serif">Cancer and AIDS combined.<o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif"><br /></span></div><div align="center" class="MsoNormal" style="font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif" style="color: #6aa84f;"><b>FOP affects 1 in a million people, </b></span></div><div align="center" class="MsoNormal" style="font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif" style="color: #6aa84f;"><b>so its not just rare,</b></span></div><div align="center" class="MsoNormal" style="font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif" style="color: #6aa84f;"><b>it's ultra-rare.</b></span></div><div class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">Finding funding for research, advocacy </span><br /><span face=""arial" , sans-serif">and community outreach <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">for these orphan diseases, <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">as they are called, is beyond challenging.<o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">However within this rare community of people, <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">there is something special about a rare disease, </span><br /><span face=""arial" , sans-serif">the people.</span><br /><span face=""arial" , sans-serif"><br /></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif"><b>These special people are… </b><o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">...the scientists who study it,</span></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="border: 1px solid rgb(204, 204, 204); color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; margin-left: auto; margin-right: auto; padding: 4px; text-align: center;"><tbody><tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigaQR-kEIUCG2WH-V-hRJxX7m1NoUjUKMUw8TxL87x7vpeY7wxVmo3ZhayX3z1M5s5Q214L-33N79DeWNU84r9eVO6vbmOdxy5wE2vL5VLMbrJZyvHUL0MsXyrymInJRpyRm1Pmf0M9Hs/s1600/three+devoted+scientists.jpg" style="color: #999999; margin-left: auto; margin-right: auto; text-decoration-line: none;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigaQR-kEIUCG2WH-V-hRJxX7m1NoUjUKMUw8TxL87x7vpeY7wxVmo3ZhayX3z1M5s5Q214L-33N79DeWNU84r9eVO6vbmOdxy5wE2vL5VLMbrJZyvHUL0MsXyrymInJRpyRm1Pmf0M9Hs/s1600/three+devoted+scientists.jpg" style="border: none; padding: 0px;" /></a></td></tr><tr><td class="tr-caption" style="font-size: 10.4px;"><span face=""arial" , "helvetica" , sans-serif" style="font-size: x-small;"><i>Researchers in the FOP lab at University of Pennsylvania.</i></span><br /><span face=""arial" , "helvetica" , sans-serif" style="font-size: x-small;"><i>Meiqi Xu, Drs Frederick Kapkab and Eileen Shore</i></span></td></tr></tbody></table><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif"><br /></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">...pharma companies who pursue the discovery of </span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">treatments and drug trials</span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgy2ZYAOaNIRL7aZ0I7R2kPIbKnib25uCAQMfqWQR1yUs1x98v5P3wVxv8-JfJbQFbCA9U4D5rD8OWyCH8CS-SH0udR8AT4WeoEEfN4sr4unq5R4N9PTRPT4hxXtJrMH95TAk3bI3LEddChaemwtGCBN0zKW6jYAzQpfEtE7SBgAsnzolW4EjyGafsH=s395" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="255" data-original-width="395" height="207" src="https://blogger.googleusercontent.com/img/a/AVvXsEgy2ZYAOaNIRL7aZ0I7R2kPIbKnib25uCAQMfqWQR1yUs1x98v5P3wVxv8-JfJbQFbCA9U4D5rD8OWyCH8CS-SH0udR8AT4WeoEEfN4sr4unq5R4N9PTRPT4hxXtJrMH95TAk3bI3LEddChaemwtGCBN0zKW6jYAzQpfEtE7SBgAsnzolW4EjyGafsH=w320-h207" title="There are 9 ongoing drug trials for FOP" width="320" /></a></div><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: center;"><i><span style="font-size: x-small;">There are currently 9 ongoing drug trials for FOP treatments.<span style="text-align: left;"> </span></span></i><span style="text-align: left;"> </span></blockquote><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"></blockquote></blockquote><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"></blockquote></blockquote><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif"><br /></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">...the patients and families who live with it</span></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="border: 1px solid rgb(204, 204, 204); color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; margin-left: auto; margin-right: auto; padding: 4px; text-align: center;"><tbody><tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgb-XHRSIAIZI4q6-gAzn0CK5Q20PgPJUYDbsrej9rPmfHWl8l2zwItxfW6J2xSsa-NVRTcYwp7NbMoM-rc31O_7hWEaXjPId2gafvnQeBXqlAoDTYwAvS4PC6mtIu0scGUPJccFHt4ZAQ/s1600/Hayden+FarWest+Skiing.png" style="color: #999999; margin-left: auto; margin-right: auto; text-decoration-line: none;"><img border="0" height="193" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgb-XHRSIAIZI4q6-gAzn0CK5Q20PgPJUYDbsrej9rPmfHWl8l2zwItxfW6J2xSsa-NVRTcYwp7NbMoM-rc31O_7hWEaXjPId2gafvnQeBXqlAoDTYwAvS4PC6mtIu0scGUPJccFHt4ZAQ/s320/Hayden+FarWest+Skiing.png" style="border: none; padding: 0px;" width="320" /></a></td></tr><tr><td class="tr-caption" style="font-size: 10.4px;"><span face=""arial" , "helvetica" , sans-serif" style="font-size: x-small;"><i>Hayden Pheif, skiing in 2008, at the Far West</i></span><br /><span face=""arial" , "helvetica" , sans-serif" style="font-size: x-small;"><i>Disabled Sports Center in Alpine Meadows, CA</i></span></td></tr></tbody></table><div class="separator" style="clear: both; color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; text-align: center;"><br /></div><div style="color: #333333; font-family: georgia, serif; line-height: 20.8px; text-align: center;"><span face=""arial" , sans-serif">...the amazing people who have only yet learned of FOP and</span><br /><span face=""arial" , sans-serif"> will go to </span><span face=""arial" , sans-serif">"great lengths" to fundraise for research</span></div><div style="color: #333333; font-family: georgia, serif; line-height: 20.8px; text-align: center;"><span face=""arial" , sans-serif">which will help to find a cure</span></div><div class="separator" style="clear: both; text-align: center;"></div><div style="color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; text-align: center;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody><tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4K0UEaMWwn1zMMBHMjFREKawu0LXYrVbdZPKgNWBOkOczV-TZ2Ry8GjdmXbC7ELUyyyX3CMqekfGvblsZZC38nvqgO1A8p9Sz_wV24qQDusxBCnVidnMlrUyBe3M7TjSPP7L61TFnbY0/s1600/gwg+finish.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4K0UEaMWwn1zMMBHMjFREKawu0LXYrVbdZPKgNWBOkOczV-TZ2Ry8GjdmXbC7ELUyyyX3CMqekfGvblsZZC38nvqgO1A8p9Sz_wV24qQDusxBCnVidnMlrUyBe3M7TjSPP7L61TFnbY0/s1600/gwg+finish.jpg" width="300" /></a></td></tr><tr><td class="tr-caption" style="font-size: 12.8px;"><span face=""arial" , "helvetica" , sans-serif"><i>Team "Girls with Grit" ran the Napa Valley Ragnar<br />(36 hour - 206 Mile) Relay in September to as a fundraiser<br />for Hayden's Hope</i></span>.</td></tr></tbody></table></div><div style="color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; text-align: center;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><br /></span></div><div style="color: #333333; font-family: georgia, serif; line-height: 20.8px; text-align: center;"><br /></div><div style="text-align: center;"><div style="color: #333333; font-family: georgia, serif; line-height: 20.8px;"><span face=""arial" , sans-serif">...Jeannie Peeper, who stood up to FOP by starting the </span></div><div style="color: #333333; font-family: georgia, serif; line-height: 20.8px;"><span face=""arial" , sans-serif">International FOP Association 25 years ago. </span></div><div style="color: #333333; font-family: georgia, serif; line-height: 20.8px;"><span face=""arial" , sans-serif">Her goal was and </span>is to raise awareness, </div><div style="color: #333333; font-family: georgia, serif; line-height: 20.8px;">provide outreach to families and those effected with FOP </div><div style="color: #333333; font-family: georgia, serif; line-height: 20.8px;">as well as to create a 501c to support fundraisers for research. </div><div style="color: #333333; line-height: 20.8px;"><br /></div><div style="color: #333333; line-height: 20.8px;"><br /></div></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody><tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF01G6deBS_eVAa8KIghIzWPHVu6HRegov988K_QRt3ITIoZ3MAAgiWolFHQdzzyMGrWldVR6jsYDEhsclbITNCZMMbZe5ZAdHQex1QM80HkAPwU-Z6bzwTMw5UzHXSTGm4TaA_Qo44hM/s1600/Jeannie_Peeper_and_Dr_Kaplan_25th_Anniversary_2013.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="230" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF01G6deBS_eVAa8KIghIzWPHVu6HRegov988K_QRt3ITIoZ3MAAgiWolFHQdzzyMGrWldVR6jsYDEhsclbITNCZMMbZe5ZAdHQex1QM80HkAPwU-Z6bzwTMw5UzHXSTGm4TaA_Qo44hM/s1600/Jeannie_Peeper_and_Dr_Kaplan_25th_Anniversary_2013.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="font-size: 12.8px;"><span face=""arial" , "helvetica" , sans-serif"><i>Jeannie Peeper with Dr. Frederick Kaplan,<br />head of FOP research at U of Penn, at the 25th<br />anniversary IFOPA celebration.</i></span></td></tr></tbody></table><div class="separator" style="clear: both; text-align: center;"></div><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;"><div align="center" class="MsoNormal" style="margin-bottom: 0pt;"></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif"><br /></span><span face=""arial" , sans-serif">These people are rare in a very special way.</span><br /><span face=""arial" , sans-serif">They give us hope.</span><br /><span face=""arial" , sans-serif"><br /></span><span face=""arial" , sans-serif">Even though the people afflicted with rare diseases <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">create a very large community, <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">their conditions remain largely unknown <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">to the vast majority of the world population. <o:p></o:p></span></div><div class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">Today, February 28th, <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">is <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif"><b>Global Rare Disease Day</b>.<o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">This day was created in the United States <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">by the National Organization for Rare Diseases (NORD) <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">to raise awareness and </span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">increase advocacy for these special diseases,<o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">as well as to provide hope to the </span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">patients and families afflicted by them.</span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><h3 style="color: #cc6600; font-weight: normal; line-height: 1.4em; margin: 0.25em 0px 0px; padding: 0px 0px 4px;"><span style="color: #0b5394; font-size: small;"><span face=""arial" , sans-serif"><span style="color: #333333; display: block;"><br /></span></span></span></h3><h3 style="color: #cc6600; font-weight: normal; line-height: 1.4em; margin: 0.25em 0px 0px; padding: 0px 0px 4px;"><span style="color: #0b5394;"><span style="font-family: "arial";"><span style="color: #333333; display: block; font-size: small;"><br /></span></span></span></h3></div></div>Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0tag:blogger.com,1999:blog-122611653958203765.post-40044566875993943382023-08-15T18:54:00.003-07:002023-08-15T19:41:46.567-07:00In Pursuit of a Cure 2023<p> </p><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOE_kEkrqdvzkq3lUK65CdBnLGDj1ozPv2zdLSZbf5kRDmVB94XHCmClSDAhfI6iKeQKTAW_RC75AasLdemoQplPoEFwuu2VO9Ha9h0omLzkhWwXhJ5wlYxXFp0Lb5bKQXwn8zSMlho5617BzgMWTzqa6Kz43CmrPACd3jU3Mx6NW6xx1KZdd_nvg5rJU/s546/Screenshot%202023-08-15%20at%206.33.45%20PM.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="348" data-original-width="546" height="129" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOE_kEkrqdvzkq3lUK65CdBnLGDj1ozPv2zdLSZbf5kRDmVB94XHCmClSDAhfI6iKeQKTAW_RC75AasLdemoQplPoEFwuu2VO9Ha9h0omLzkhWwXhJ5wlYxXFp0Lb5bKQXwn8zSMlho5617BzgMWTzqa6Kz43CmrPACd3jU3Mx6NW6xx1KZdd_nvg5rJU/w203-h129/Screenshot%202023-08-15%20at%206.33.45%20PM.png" width="203" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXEAPZXJEVN1214YFheNMyBq7uKMezN9WdvdGzv9Ze3tS7-U-9W-NytmQed33xKV15564c4v_ng-W5kgwx6NeXdk85VMboTMGlluMF9kgiYVEOv92jPPl8Xs7vHvTwabEw9wzn17B4w2DXOhn4pTul8DEEUqvqy03-1QQu5Lk8fq2Z6qryWmMIsfV8KUg/s1930/Hayden%20at%20Beach.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1907" data-original-width="1930" height="316" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXEAPZXJEVN1214YFheNMyBq7uKMezN9WdvdGzv9Ze3tS7-U-9W-NytmQed33xKV15564c4v_ng-W5kgwx6NeXdk85VMboTMGlluMF9kgiYVEOv92jPPl8Xs7vHvTwabEw9wzn17B4w2DXOhn4pTul8DEEUqvqy03-1QQu5Lk8fq2Z6qryWmMIsfV8KUg/s320/Hayden%20at%20Beach.png" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;"><br /></span></div><span style="color: #0b5394; font-family: helvetica;">Hayden's life was permanently altered when he was diagnosed </span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;">with </span><span style="color: #0b5394; font-family: helvetica;">FOP in 2002 at the tender age of 2-1/2. </span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;">FOP is one of the rarest, most disabling genetic conditions known </span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;">to medicine. </span><span style="color: #0b5394; font-family: helvetica;">It occurs in approximately 1 in 1 million </span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;">people world wide.</span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;">It causes bone to form in muscles, tendons, ligaments and other </span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;">connective tissues </span><span style="color: #0b5394; font-family: helvetica;">rendering the person immobile. </span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;">Essentially frozen within a second skeleton.</span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394;"><span style="font-family: helvetica;">In 2006, the FOP gene was discovered by the </span></span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394;"><span style="font-family: helvetica;">FOP Lab at U of Penn. </span><span style="font-family: helvetica;">Since then, </span></span><span style="color: #0b5394; font-family: helvetica;">the IFOPA has been working </span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;">t</span><span style="color: #0b5394; font-family: helvetica;">owards finding multiple therapies for those with FOP.</span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;">Please help us, Hayden and the FOP community on our </span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;">relentless mission to find a </span><span style="color: #0b5394; font-family: helvetica;">therapy and a cure for FOP </span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;">by donating to the In Pursuit of a Cure Fundraiser. </span></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;"><a href="https://ifopa.salsalabs.org/inpursuitofacure2023/p/inpursuitofacurewearerelentless/index.html" rel="nofollow" target="_blank"><b>DONATE HERE</b></a></span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;">Please join us at an exclusive LIVE research webinar on August 30th. </span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;">There will be three time options available so you can hear updates on </span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;">gene therapy research and learn about research priorities. </span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;">This is an exciting opportunity to learn how your donation is </span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;">making an impact. </span></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://ifopa.formstack.com/forms/ipoac_2023" rel="nofollow" target="_blank"><span style="color: #0b5394; font-family: helvetica;"><b>REGISTER FOR WEBINAR HERE</b></span></a></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #0b5394; font-family: helvetica;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><span style="color: #38761d; font-family: helvetica; font-size: large;"><b><i>WE ARE RELENTLESS!</i></b></span></div><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><br /></div><br /><p></p>Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0tag:blogger.com,1999:blog-122611653958203765.post-27071544798367802542022-09-18T14:35:00.000-07:002022-09-18T14:35:26.874-07:00In Pursuit of a Cure<p><span style="font-family: helvetica;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMyU7lBDOm7RTBG_ScxPc2JYy8p12nCDFzRya2gPZulcdUwV8N7Q8Nqjco2YBbAqWX22A7Jjwt9vlsO5e0tKm2wYpF4wOrIUuaZQ9mhb612O6z7Y4-3rQLT_0zOByYS4Uq7JLuQG65av2wzaN4VLCzwAJsEgtK-0r1HVah84UcHoER-jAJ_j71p9u5/s3024/Hayden%20CAL%20Soccer.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="2986" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMyU7lBDOm7RTBG_ScxPc2JYy8p12nCDFzRya2gPZulcdUwV8N7Q8Nqjco2YBbAqWX22A7Jjwt9vlsO5e0tKm2wYpF4wOrIUuaZQ9mhb612O6z7Y4-3rQLT_0zOByYS4Uq7JLuQG65av2wzaN4VLCzwAJsEgtK-0r1HVah84UcHoER-jAJ_j71p9u5/s320/Hayden%20CAL%20Soccer.jpg" width="316" /></a></span></div><span style="font-family: helvetica;">In Sept 2002, Hayden was diagnosed with FOP, a rare debilitating bone condition that will eventually leave him frozen in his own body unless a cure is found. At the time there was no cure or therapies available. In 2006, the gene mutation which causes FOP was discovered and since then the race has been on to find a treatment and a cure. While there are several drug trials going on right now which, if FDA approved, will provide a treatment for FOP. It is gene therapy that will ultimately be the cure for Hayden and the rest of the FOP community.</span><p></p><p><span style="font-family: helvetica;">For the third year in a row, our FOP community will come together for </span><b style="font-family: helvetica;"><i>In Pursuit of a Cure</i></b><span style="font-family: helvetica;">- an annual global event that supports the IFOPA's first-ever gene therapy research program and helps support the advancement of clinical trial research. Please join me in supporting this program by donating <a href="https://ifopa.salsalabs.org/inpursuitofacure2022/p/inpursuitofacureinhonorofhaydenpheif/index.html" target="_blank">here</a>. </span></p><p><br /></p>Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0tag:blogger.com,1999:blog-122611653958203765.post-74701110892006119332022-02-28T17:43:00.004-08:002022-02-28T17:55:43.276-08:00Rare Disease Day 2022<p> <b style="color: #333333; font-family: georgia, serif; text-align: center;"><span face=""arial" , sans-serif" style="color: #222222;">rare</span></b><span style="color: #222222; font-family: georgia, serif; text-align: center;">/re(ə)r/</span><span style="color: #222222; font-family: georgia, serif; text-align: center;"> </span><span style="color: #333333; font-family: georgia, serif; text-align: center;">Adjective</span></p><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt; text-align: center;"><span face=""arial" , sans-serif">1.) marked by unusual quality, merit or appeal, distinctive<o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt; text-align: center;"><span face=""arial" , sans-serif">2.) seldom occurring or found uncommonly<o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt; text-align: center;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt; text-align: center;"><span face=""arial" , sans-serif">Typically when we think of something as rare, <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt; text-align: center;"><span face=""arial" , sans-serif">we think of something special, <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt; text-align: center;"><span face=""arial" , sans-serif">unique or hard to come by.<o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt; text-align: center;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt; text-align: center;"><span face=""arial" , sans-serif">Something spectacular such as the Hope Diamond,<span style="font-size: small;"><o:p></o:p></span></span></div><div class="separator" style="clear: both; color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFOAFB0JmC5HzO-FJgkfISrNMaSS8CRwwkc7McIN8YNStFcD2VL8Ce7cji_Plz2xmBqaCiSwLRU9ggtdZzLQ0zyg_JiWJw7hbkQeIxYd7TVTTMK0HyFFgkS7F67Kq3h8lR6aNzKX0vOX4/s1600/hope+diamond.jpg" style="color: #999999; margin-left: 1em; margin-right: 1em; text-decoration-line: none;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFOAFB0JmC5HzO-FJgkfISrNMaSS8CRwwkc7McIN8YNStFcD2VL8Ce7cji_Plz2xmBqaCiSwLRU9ggtdZzLQ0zyg_JiWJw7hbkQeIxYd7TVTTMK0HyFFgkS7F67Kq3h8lR6aNzKX0vOX4/s1600/hope+diamond.jpg" style="border: 1px solid rgb(204, 204, 204); padding: 4px;" /></a></div><div style="color: #333333; font-family: georgia, serif; line-height: 20.8px; text-align: center;"><span style="font-size: x-small;"><br /></span> <span face=""arial" , sans-serif">or discovering long, lost ancient ruins</span></div><div class="separator" style="clear: both; color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_IngR-vZoZewRERgJJl3T0AZiK4rXnV6Lk-Qii8Svlf9JGvq_k8jgidJU3gsPiyA9kYjmdEbSDIJAif6dmT3iT3sn3Vdwj3nrF4EnNaVvxnXcxWyfP7d8Ccxnxs67lb3DQPGH_FrX03I/s1600/camels+and+pyramids.jpg" style="color: #999999; margin-left: 1em; margin-right: 1em; text-decoration-line: none;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_IngR-vZoZewRERgJJl3T0AZiK4rXnV6Lk-Qii8Svlf9JGvq_k8jgidJU3gsPiyA9kYjmdEbSDIJAif6dmT3iT3sn3Vdwj3nrF4EnNaVvxnXcxWyfP7d8Ccxnxs67lb3DQPGH_FrX03I/s1600/camels+and+pyramids.jpg" style="border: 1px solid rgb(204, 204, 204); padding: 4px;" /></a></div><div class="separator" style="clear: both; color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; text-align: center;"><br /></div><div class="separator" style="clear: both; color: #333333; font-family: georgia, serif; line-height: 20.8px; text-align: center;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">or even a fossilized sand dollar </span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">such as the one I found recently on the beach.</span></div><div class="separator" style="clear: both; color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0iNym-CuYovAPj8sIKexmbFjmsHo_5nkHEYUFkDt0Zhy7BoZHmHwMDG1PDboT2M-L82LM1hzlJ7zrqKORCdc1gIk1x6VS1t3gt629xKp6Jou-mt4eIk1TAqWzq5CjlePulVfugcP6WVM/s1600/Sand+Dollar+Fossil.JPG" style="color: #999999; margin-left: 1em; margin-right: 1em; text-decoration-line: none;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0iNym-CuYovAPj8sIKexmbFjmsHo_5nkHEYUFkDt0Zhy7BoZHmHwMDG1PDboT2M-L82LM1hzlJ7zrqKORCdc1gIk1x6VS1t3gt629xKp6Jou-mt4eIk1TAqWzq5CjlePulVfugcP6WVM/s320/Sand+Dollar+Fossil.JPG" style="border: 1px solid rgb(204, 204, 204); padding: 4px;" width="240" /></a></div><br style="color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px;" /><div class="separator" style="clear: both; color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; text-align: center;"><br /></div><div class="MsoNormal" style="color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; margin-bottom: 0pt; text-align: center;"></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">Rarely, no pun intended, do we like to associate </span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">the word "rare" with an illness.</span><span face=""arial" , sans-serif"> </span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">However there is nothing spectacular about </span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">receiving a diagnosis of a rare disease. <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">It is, in a word, devastating.<o:p></o:p></span></div><div align="center" class="MsoNormal" style="font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif" style="color: #3d85c6;"><b>FOP is a rare disease.</b></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">Less than 5% of rare diseases have </span><br /><span face=""arial" , sans-serif">any therapies or treatments.<o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;">And 70% of genetic rare diseases </div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;">like FOP start in childhood</div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">There are over 6,000 identified rare diseases with no cures.<o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">300 million people have a rare disease. <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">That is <b>more</b> than all those with </span><br /><span face=""arial" , sans-serif">Cancer and AIDS combined.<o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif"><br /></span></div><div align="center" class="MsoNormal" style="font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif" style="color: #6aa84f;"><b>FOP affects 1 in a million people, </b></span></div><div align="center" class="MsoNormal" style="font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif" style="color: #6aa84f;"><b>so its not just rare,</b></span></div><div align="center" class="MsoNormal" style="font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif" style="color: #6aa84f;"><b>it's ultra-rare.</b></span></div><div class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">Finding funding for research, advocacy </span><br /><span face=""arial" , sans-serif">and community outreach <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">for these orphan diseases, <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">as they are called, is beyond challenging.<o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">However within this rare community of people, <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">there is something special about a rare disease, </span><br /><span face=""arial" , sans-serif">the people.</span><br /><span face=""arial" , sans-serif"><br /></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif"><b>These special people are… </b><o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">...the scientists who study it,</span></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="border: 1px solid rgb(204, 204, 204); color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; margin-left: auto; margin-right: auto; padding: 4px; text-align: center;"><tbody><tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigaQR-kEIUCG2WH-V-hRJxX7m1NoUjUKMUw8TxL87x7vpeY7wxVmo3ZhayX3z1M5s5Q214L-33N79DeWNU84r9eVO6vbmOdxy5wE2vL5VLMbrJZyvHUL0MsXyrymInJRpyRm1Pmf0M9Hs/s1600/three+devoted+scientists.jpg" style="color: #999999; margin-left: auto; margin-right: auto; text-decoration-line: none;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigaQR-kEIUCG2WH-V-hRJxX7m1NoUjUKMUw8TxL87x7vpeY7wxVmo3ZhayX3z1M5s5Q214L-33N79DeWNU84r9eVO6vbmOdxy5wE2vL5VLMbrJZyvHUL0MsXyrymInJRpyRm1Pmf0M9Hs/s1600/three+devoted+scientists.jpg" style="border: none; padding: 0px;" /></a></td></tr><tr><td class="tr-caption" style="font-size: 10.4px;"><span face=""arial" , "helvetica" , sans-serif" style="font-size: x-small;"><i>Researchers in the FOP lab at University of Pennsylvania.</i></span><br /><span face=""arial" , "helvetica" , sans-serif" style="font-size: x-small;"><i>Meiqi Xu, Drs Frederick Kapkab and Eileen Shore</i></span></td></tr></tbody></table><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif"><br /></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">...pharma companies who pursue the discovery of </span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">treatments and drug trials</span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgy2ZYAOaNIRL7aZ0I7R2kPIbKnib25uCAQMfqWQR1yUs1x98v5P3wVxv8-JfJbQFbCA9U4D5rD8OWyCH8CS-SH0udR8AT4WeoEEfN4sr4unq5R4N9PTRPT4hxXtJrMH95TAk3bI3LEddChaemwtGCBN0zKW6jYAzQpfEtE7SBgAsnzolW4EjyGafsH=s395" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="255" data-original-width="395" height="207" src="https://blogger.googleusercontent.com/img/a/AVvXsEgy2ZYAOaNIRL7aZ0I7R2kPIbKnib25uCAQMfqWQR1yUs1x98v5P3wVxv8-JfJbQFbCA9U4D5rD8OWyCH8CS-SH0udR8AT4WeoEEfN4sr4unq5R4N9PTRPT4hxXtJrMH95TAk3bI3LEddChaemwtGCBN0zKW6jYAzQpfEtE7SBgAsnzolW4EjyGafsH=w320-h207" title="There are 9 ongoing drug trials for FOP" width="320" /></a></div><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: center;"><i><span style="font-size: x-small;">There are currently 9 ongoing drug trials for FOP treatments.<span style="text-align: left;"> </span></span></i><span style="text-align: left;"> </span></blockquote><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"></blockquote></blockquote><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"></blockquote></blockquote><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif"><br /></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">...the patients and families who live with it</span></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="border: 1px solid rgb(204, 204, 204); color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; margin-left: auto; margin-right: auto; padding: 4px; text-align: center;"><tbody><tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgb-XHRSIAIZI4q6-gAzn0CK5Q20PgPJUYDbsrej9rPmfHWl8l2zwItxfW6J2xSsa-NVRTcYwp7NbMoM-rc31O_7hWEaXjPId2gafvnQeBXqlAoDTYwAvS4PC6mtIu0scGUPJccFHt4ZAQ/s1600/Hayden+FarWest+Skiing.png" style="color: #999999; margin-left: auto; margin-right: auto; text-decoration-line: none;"><img border="0" height="193" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgb-XHRSIAIZI4q6-gAzn0CK5Q20PgPJUYDbsrej9rPmfHWl8l2zwItxfW6J2xSsa-NVRTcYwp7NbMoM-rc31O_7hWEaXjPId2gafvnQeBXqlAoDTYwAvS4PC6mtIu0scGUPJccFHt4ZAQ/s320/Hayden+FarWest+Skiing.png" style="border: none; padding: 0px;" width="320" /></a></td></tr><tr><td class="tr-caption" style="font-size: 10.4px;"><span face=""arial" , "helvetica" , sans-serif" style="font-size: x-small;"><i>Hayden Pheif, skiing in 2008, at the Far West</i></span><br /><span face=""arial" , "helvetica" , sans-serif" style="font-size: x-small;"><i>Disabled Sports Center in Alpine Meadows, CA</i></span></td></tr></tbody></table><div class="separator" style="clear: both; color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; text-align: center;"><br /></div><div style="color: #333333; font-family: georgia, serif; line-height: 20.8px; text-align: center;"><span face=""arial" , sans-serif">...the amazing people who have only yet learned of FOP and</span><br /><span face=""arial" , sans-serif"> will go to </span><span face=""arial" , sans-serif">"great lengths" to fundraise for research</span></div><div style="color: #333333; font-family: georgia, serif; line-height: 20.8px; text-align: center;"><span face=""arial" , sans-serif">which will help to find a cure</span></div><div class="separator" style="clear: both; text-align: center;"></div><div style="color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; text-align: center;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody><tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4K0UEaMWwn1zMMBHMjFREKawu0LXYrVbdZPKgNWBOkOczV-TZ2Ry8GjdmXbC7ELUyyyX3CMqekfGvblsZZC38nvqgO1A8p9Sz_wV24qQDusxBCnVidnMlrUyBe3M7TjSPP7L61TFnbY0/s1600/gwg+finish.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4K0UEaMWwn1zMMBHMjFREKawu0LXYrVbdZPKgNWBOkOczV-TZ2Ry8GjdmXbC7ELUyyyX3CMqekfGvblsZZC38nvqgO1A8p9Sz_wV24qQDusxBCnVidnMlrUyBe3M7TjSPP7L61TFnbY0/s1600/gwg+finish.jpg" width="300" /></a></td></tr><tr><td class="tr-caption" style="font-size: 12.8px;"><span face=""arial" , "helvetica" , sans-serif"><i>Team "Girls with Grit" ran the Napa Valley Ragnar<br />(36 hour - 206 Mile) Relay in September to as a fundraiser<br />for Hayden's Hope</i></span>.</td></tr></tbody></table></div><div style="color: #333333; font-family: georgia, serif; font-size: 13px; line-height: 20.8px; text-align: center;"><span face=""arial" , sans-serif" style="font-size: 12pt;"><br /></span></div><div style="color: #333333; font-family: georgia, serif; line-height: 20.8px; text-align: center;"><br /></div><div style="text-align: center;"><div style="color: #333333; font-family: georgia, serif; line-height: 20.8px;"><span face=""arial" , sans-serif">...Jeannie Peeper, who stood up to FOP by starting the </span></div><div style="color: #333333; font-family: georgia, serif; line-height: 20.8px;"><span face=""arial" , sans-serif">International FOP Association 25 years ago. </span></div><div style="color: #333333; font-family: georgia, serif; line-height: 20.8px;"><span face=""arial" , sans-serif">Her goal was and </span>is to raise awareness, </div><div style="color: #333333; font-family: georgia, serif; line-height: 20.8px;">provide outreach to families and those effected with FOP </div><div style="color: #333333; font-family: georgia, serif; line-height: 20.8px;">as well as to create a 501c to support fundraisers for research. </div><div style="color: #333333; line-height: 20.8px;"><br /></div><div style="color: #333333; line-height: 20.8px;"><br /></div></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody><tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF01G6deBS_eVAa8KIghIzWPHVu6HRegov988K_QRt3ITIoZ3MAAgiWolFHQdzzyMGrWldVR6jsYDEhsclbITNCZMMbZe5ZAdHQex1QM80HkAPwU-Z6bzwTMw5UzHXSTGm4TaA_Qo44hM/s1600/Jeannie_Peeper_and_Dr_Kaplan_25th_Anniversary_2013.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="230" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF01G6deBS_eVAa8KIghIzWPHVu6HRegov988K_QRt3ITIoZ3MAAgiWolFHQdzzyMGrWldVR6jsYDEhsclbITNCZMMbZe5ZAdHQex1QM80HkAPwU-Z6bzwTMw5UzHXSTGm4TaA_Qo44hM/s1600/Jeannie_Peeper_and_Dr_Kaplan_25th_Anniversary_2013.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="font-size: 12.8px;"><span face=""arial" , "helvetica" , sans-serif"><i>Jeannie Peeper with Dr. Frederick Kaplan,<br />head of FOP research at U of Penn, at the 25th<br />anniversary IFOPA celebration.</i></span></td></tr></tbody></table><div class="separator" style="clear: both; text-align: center;"></div><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;"><div align="center" class="MsoNormal" style="margin-bottom: 0pt;"></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif"><br /></span><span face=""arial" , sans-serif">These people are rare in a very special way.</span><br /><span face=""arial" , sans-serif">They give us hope.</span><br /><span face=""arial" , sans-serif"><br /></span><span face=""arial" , sans-serif">Even though the people afflicted with rare diseases <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">create a very large community, <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">their conditions remain largely unknown <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">to the vast majority of the world population. <o:p></o:p></span></div><div class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">Today, February 28th, <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">is <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif"><b>Global Rare Disease Day</b>.<o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">This day was created in the United States <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">by the National Organization for Rare Diseases (NORD) <o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">to raise awareness and </span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">increase advocacy for these special diseases,<o:p></o:p></span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">as well as to provide hope to the </span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><span face=""arial" , sans-serif">patients and families afflicted by them.</span></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><br /></div><div align="center" class="MsoNormal" style="color: #333333; font-family: georgia, serif; line-height: 20.8px; margin-bottom: 0pt;"><h3 style="color: #cc6600; font-weight: normal; line-height: 1.4em; margin: 0.25em 0px 0px; padding: 0px 0px 4px;"><span style="color: #0b5394; font-size: small;"><span face=""arial" , sans-serif"><span style="color: #333333; display: block;"><br /></span></span></span></h3><h3 style="color: #cc6600; font-weight: normal; line-height: 1.4em; margin: 0.25em 0px 0px; padding: 0px 0px 4px;"><span style="color: #0b5394;"><span style="font-family: "arial";"><span style="color: #333333; display: block; font-size: small;"><br /></span></span></span></h3></div></div>Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0tag:blogger.com,1999:blog-122611653958203765.post-88763090739592055592019-06-08T09:23:00.003-07:002022-02-15T17:50:12.655-08:00T minus 24 hours - 2019 Haydens Hope Dipsea Race<div class="separator" style="clear: both; text-align: center;"><br /></div>
In 24 hours, team Hayden's hope will be running the Dipsea Race in honor of Hayden and to raise awareness and funds for research. Please consider donating by clicking <a href="https://ifopa.salsalabs.org/teamcurefop/p/haydenshope2ndannualdipsearunforfopresearchcurefop/index.html" target="_blank">here</a>.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnYLdJa_qlmXGqlZ3xT1kKWOvIiq-KlzCmRkvGj5b8Gdon2YFx3NyaHqNG1_5S-oJzlhFAM9jVfeCrYe7Jff9hrZ4-G-D8jr7kJrqWxbNF4djIkCAYtFIYlRVvuMPMFvxu3RsJiFgEn1A/s1600/Screenshot+2019-06-08+09.19.56.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="599" data-original-width="600" height="319" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnYLdJa_qlmXGqlZ3xT1kKWOvIiq-KlzCmRkvGj5b8Gdon2YFx3NyaHqNG1_5S-oJzlhFAM9jVfeCrYe7Jff9hrZ4-G-D8jr7kJrqWxbNF4djIkCAYtFIYlRVvuMPMFvxu3RsJiFgEn1A/s320/Screenshot+2019-06-08+09.19.56.png" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9ovSN-Yzwum6LCvxLsIO1szlQu29L1dEW5BUqXLdCEjqi0-J7KFMkJwuXyXeqpTOnv8PPv1xOpmIdFyyn4TMJBTSPDlbWHHGXR-oCSc3z579nALuIjQyLdd8OzPFRzfy_KjIRkmUnVSI/s1600/Marin-IJ-race-start_3.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="269" data-original-width="500" height="172" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9ovSN-Yzwum6LCvxLsIO1szlQu29L1dEW5BUqXLdCEjqi0-J7KFMkJwuXyXeqpTOnv8PPv1xOpmIdFyyn4TMJBTSPDlbWHHGXR-oCSc3z579nALuIjQyLdd8OzPFRzfy_KjIRkmUnVSI/s320/Marin-IJ-race-start_3.jpg" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjvLmTGyfPhLxOO7lKIUD9hZFGSqOLc1FqfabI4EKIrZl0yFk5YX3xHkVGKx0nyXkY8qpUY3ZXAZLj6iYxBBvGG0lHpIwwFcxYzlrnSD6hs1DOdeTQ08Q9oWXT5ZS-DVb2LrAFRg1_JaI/s1600/384223_orig.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="367" data-original-width="787" height="149" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjvLmTGyfPhLxOO7lKIUD9hZFGSqOLc1FqfabI4EKIrZl0yFk5YX3xHkVGKx0nyXkY8qpUY3ZXAZLj6iYxBBvGG0lHpIwwFcxYzlrnSD6hs1DOdeTQ08Q9oWXT5ZS-DVb2LrAFRg1_JaI/s320/384223_orig.png" width="320" /></a></div>
<br />Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com5tag:blogger.com,1999:blog-122611653958203765.post-53153803786360687632019-05-27T08:58:00.003-07:002019-05-28T09:54:56.825-07:00Hayden's Hope Dipsea Race<div class="MsoNormal" style="background: white;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0hYWl7eIr3f3Y0AMi5n4sy4hhlIBI7jYJ79n88QWOi0daXSIu_ZPgzjZXRBr2hm_yG6SV5fSVLCTTDLBRccmrc-yqIftqqKoE1gLJPMV9_QbiW3hhoHl4_0qTvb7gHB0YGUDL6vQ_nMQ/s1600/CureFOP.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="205" data-original-width="246" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0hYWl7eIr3f3Y0AMi5n4sy4hhlIBI7jYJ79n88QWOi0daXSIu_ZPgzjZXRBr2hm_yG6SV5fSVLCTTDLBRccmrc-yqIftqqKoE1gLJPMV9_QbiW3hhoHl4_0qTvb7gHB0YGUDL6vQ_nMQ/s1600/CureFOP.png" /></a></div>
<span style="font-family: "arial" , sans-serif; font-size: 11pt;">2019 TEAM Hayden's Hope<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 11pt;">Liz Lawler - Carol Tagliaferri - Kelly Bates - Lora Anderson - Megan Olsen<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 11pt;">Sunday June 9th, Team Hayden's Hope will be running the <a href="https://www.nytimes.com/2018/06/13/sports/dipsea-trail-running.html" target="_blank">Dipsea Race</a> in honor of Hayden and the Int’l FOP Association to raise awareness and funds research for a debilitating disease called Fibrodysplasia Ossificans Progressiva or FOP.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 11pt;">Hayden was diagnosed with FOP on Sept 11, 2002. This genetic disease affects 1 in 2million people. He is one of 800 people in the world with the condition.<span style="mso-spacerun: yes;"> </span>Slowly his muscles are turning to bone, creating a second skeleton, rendering him immobile.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 11pt;">Since Hayden was diagnosed in 2002, the gene that causes this horrific condition was discovered in 2006, multiple pharmaceutical companies have started collaborating to find a therapy. Currently, there are three active and recruiting drug trials for a potential therapy.<span style="mso-spacerun: yes;"> </span>This is an amazing accomplishment considering that most genetic conditions never find a therapy.<span style="mso-spacerun: yes;"> </span>There are no genetic conditions that have a cure.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 11pt;">Please consider donating to the IFOPA in honor of Hayden’s Hope.<span style="mso-spacerun: yes;"> </span><a href="https://ifopa.salsalabs.org/teamcurefop/p/haydenshope2ndannualdipsearunforfopresearchcurefop/index.html" target="_blank">Click here to donate</a> on line. Or if you wish to send a check, please make the check out to the <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">International FOP Association</i></b> and send to Hayden’s Hope / IFOPA c/o Megan Olsen 164 Tamalpais Avenue, Mill Valley, CA. 94941.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 11pt;">The International FOP Association is a 501c3 and has received a gold rating for transparency from <a href="https://www.guidestar.org/profile/59-2918100">GuideStar</a>.</span></div>
Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0tag:blogger.com,1999:blog-122611653958203765.post-15843210210776286692019-02-04T09:18:00.000-08:002019-05-27T09:18:30.779-07:00FOP National Organizations<span style="background-color: white; color: #444444; font-family: "verdana" , sans-serif;"><span style="font-size: 16px;">Although FOP is a rare disease, affecting only approximately 2500 world wide, the work of the International FOP Association is supported and complemented by national organizations across the globe. Organizations are listed below, along with website, social media pages and email contact, if available. While these organizations are not formally affiliated with IFOPA, we are deeply grateful for the work they do outside of the USA to serve the FOP community and connect individuals and families with resources and other FOP patients on a regional and national level.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjk-E2LB6Wqn4cMtrUCvOHap0gbVRpbJl8gky37fe8T4KTO9OQNtnPPiYG-qpa4tHO5rj8UkEVI3Z6OzJPEudgwKszfp6eP1BRVKfcvUYtBjw0pj2q9_TU6ADh2sjfdce5h1r6mpCzj4k/s1600/Screenshot+2019-05-27+09.14.30.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="610" data-original-width="327" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjk-E2LB6Wqn4cMtrUCvOHap0gbVRpbJl8gky37fe8T4KTO9OQNtnPPiYG-qpa4tHO5rj8UkEVI3Z6OzJPEudgwKszfp6eP1BRVKfcvUYtBjw0pj2q9_TU6ADh2sjfdce5h1r6mpCzj4k/s640/Screenshot+2019-05-27+09.14.30.png" width="340" /></a></div>
<span style="background-color: white; color: #444444; font-family: "verdana" , sans-serif;"><span style="font-size: 16px;"><br /></span></span>Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0tag:blogger.com,1999:blog-122611653958203765.post-12905434989933230422018-11-14T09:23:00.000-08:002019-05-27T09:24:26.983-07:0027th Annual Research Report on FOP<h3 style="background-color: white; box-sizing: border-box; color: #009e5f; font-family: "Open Sans", proxima-nova, Helvetica, sans-serif; font-size: 1.6em; line-height: 1em; margin: 0px 0px 25px; padding: 0px;">
<em style="box-sizing: border-box;">The 27th Annual Report is Now Available!</em></h3>
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<a href="https://d3n8a8pro7vhmx.cloudfront.net/ifopa/pages/103/attachments/original/1546541800/Annual_Report_of_FOP_Collaborative_Research_Project_2018_19.pdf?1546541800" rel="noopener" style="box-sizing: border-box; color: #03549f; outline: none;" target="_blank"><img alt="" height="271" src="https://d3n8a8pro7vhmx.cloudfront.net/ifopa/pages/722/attachments/original/1546619294/report_cover1819.png?1546619294" style="border: none; box-sizing: border-box; float: right; height: auto; max-width: 100%; vertical-align: middle;" width="214" /></a>Each year, the Center for Research in FOP and Related Disorders at the University of Pennsylvania issues its annual collaborative report on FOP research. The <span style="box-sizing: border-box;">27th Annual Report written by </span>Drs. Fred Kaplan, Eileen Shore and Mona Al Mukaddam is now available. <a href="https://d3n8a8pro7vhmx.cloudfront.net/ifopa/pages/722/attachments/original/1542117226/FOP_PennMed_AR2017_intereactive2.pdf?1542117226" rel="noopener" style="box-sizing: border-box; color: #03549f; outline: none;" target="_blank"></a></div>
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<a href="https://d3n8a8pro7vhmx.cloudfront.net/ifopa/pages/103/attachments/original/1546541800/Annual_Report_of_FOP_Collaborative_Research_Project_2018_19.pdf?1546541800" rel="noopener" style="box-sizing: border-box; color: #03549f; outline: none;" target="_blank">Download the report</a> for the best interactive reading experience. The arrows at the top allow you to flip through the document; the link in the middle at the top of each page returns you to the Table of Contents.</div>
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If you would like a print copy of the report, please contact Kamlesh (Kay) Rai at <a href="mailto:kamlesh.rai@uphs.upenn.edu" rel="noopener" style="box-sizing: border-box; color: #03549f; outline: none;" target="_blank">kamlesh.rai@uphs.upenn.edu</a>. </div>
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Thank you to Fred, Eileen and Mona for writing the report and to the entire FOP research community for all that you are doing to understand more about FOP and develop treatments and, one day, a cure.</div>
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Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0tag:blogger.com,1999:blog-122611653958203765.post-56130714579025504722018-09-28T09:21:00.000-07:002019-05-27T09:21:46.783-07:00Dr. Hsaio's Research Lab<h4 style="background-color: white; box-sizing: border-box; color: #5c5c5c; font-family: "Open Sans", proxima-nova, Helvetica, sans-serif; font-size: 1.2em; line-height: 1em; margin: 0px 0px 5px; padding: 0px;">
Hsiao Lab at the University of California, San Francisco</h4>
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The <a href="https://wiki.library.ucsf.edu/display/HsiaoLab/Home" rel="noopener" style="box-sizing: border-box; color: #03549f; outline: none;" target="_blank">Hsiao Lab at UCSF</a> has a variety of ongoing clinical studies related to the genetics and disease progression in FOP. </div>
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Musculoskeletal disorders affecting the bones and joints are a growing health problem. Skeletal birth defects and dysplasias often cause significant physical stigmata and medical complications. In adults, osteoporosis, chronic joint symptoms, arthritis, and fractures lead to significant morbidity. Unfortunately, our ability to effectively prevent or treat any of these skeletal diseases is still very rudimentary. </div>
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Our lab uses the skeletal system as a basis for understanding how hormonal and genetic factors affect human development and disease. By using a wide spectrum of approaches, we hope to develop a broader understanding of the biology underlying skeletal development, develop new models for studying disease pathology, and devise novel therapeutic approaches for treating human skeletal disorders and bone injuries.</div>
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<span style="font-size: 20px; letter-spacing: -0.008em;">Learn about what we do in 46 seconds!</span></div>
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See Ed Hsiao's elevator pitch from the 2013 CIRM Grantee's conference: <a class="external-link" href="http://www.youtube.com/watch?feature=player_detailpage&v=02zDOhB07wc" rel="nofollow" style="color: #0052cc; text-decoration-line: none;" target="_blank">Edward Hsiao - 2013 CIRM Grantee Elevator Pitch</a></div>
Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0tag:blogger.com,1999:blog-122611653958203765.post-19850792797750850732018-05-30T10:41:00.005-07:002018-05-30T10:43:03.338-07:00Hayden's Hope 2018 Fundraiser<div class="dDoNo" style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: xx-large !important; font-weight: lighter !important; line-height: normal; margin-bottom: 0px;">
<span data-dobid="hdw">grit</span></div>
<div class="vmod" style="background-color: white; font-family: Roboto, arial, sans-serif;">
<div class="lr_dct_ent_ph" style="color: #222222; font-size: large;">
<span class="lr_dct_ph XpoqFe">/ɡrit/</span></div>
<div class="lr_dct_ent_ph">
<span class="lr_dct_ph XpoqFe"></span><br />
<div class="lr_dct_sf_h" style="color: #222222; font-size: small; padding-top: 10px;">
<span class="lr_dct_ph XpoqFe"><i>noun</i></span></div>
<span class="lr_dct_ph XpoqFe">
<div class="xpdxpnd vk_gy" data-mh="-1" style="color: rgb(135, 135, 135) !important; font-size: small; max-height: none; overflow: hidden; transition: max-height 0.3s;">
noun: <b>grit</b></div>
<ol class="lr_dct_sf_sens" style="border: 0px; color: #222222; font-size: small; margin: 0px; padding: 0px 0px 0px 20px;">
<li style="border: 0px; list-style: none; margin: 0px; padding: 0px;"><div class="vmod">
<div class="lr_dct_sf_sen Uekwlc XpoqFe" style="font-weight: lighter !important; padding-top: 10px;">
<div style="float: left;">
1.</div>
<div style="margin-left: 20px;">
<div class="PNlCoe XpoqFe">
<div data-dobid="dfn" style="display: inline;">
small, loose particles of stone or sand.</div>
<span class="vmod"></span><br />
<div class="vk_gy" style="color: rgb(135, 135, 135) !important;">
<span class="vmod">"She had a bit of grit in her trail shoe after running the Dipsea Race."</span></div>
<span class="vmod">
</span><br />
<div class="vmod">
<br /></div>
</div>
</div>
</div>
</div>
</li>
<li style="border: 0px; list-style: none; margin: 0px; padding: 0px;"><div class="vk_gy" style="color: rgb(135, 135, 135) !important;">
<div style="color: #222222; float: left;">
2.</div>
<div style="color: #222222; margin-left: 20px;">
<div class="PNlCoe XpoqFe">
<div data-dobid="dfn" style="display: inline;">
courage and resolve; strength of character.</div>
<span class="vmod"></span><br />
<div class="vk_gy" style="color: rgb(135, 135, 135) !important;">
<span class="vmod">"Hayden displays the <b>true grit</b> in the face of a rare debilitating disease."</span></div>
<span class="vmod">
</span></div>
</div>
</div>
</li>
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<span style="color: #878787; font-size: x-small;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 11.0pt;">2018
TEAM Girls with Grit<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white;">
<span style="font-family: "arial" , sans-serif; font-size: 11.0pt;">Megan
Olsen - Lora Anderson - Liz Lawler - Monika Kaplan - Mimi Hahn - Carol
Tagliaferri<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="background: white;">
<span style="font-family: "arial" , sans-serif; font-size: 11.0pt;">Sunday
June 10th, the Girls with Grit will be running the <a href="https://www.dipsea.org/index.php">Dipsea Race</a> in honor of Hayden's Hope
and the Int’l FOP Association to raise awareness and funds research for a debilitating
disease called Fibrodysplasia Ossificans Progressiva or FOP.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="background: white;">
<span style="font-family: "arial" , sans-serif; font-size: 11.0pt;">Hayden
was diagnosed with FOP on Sept 11, 2002. This genetic disease affects 1 in 2million
people. He is one of 800 people in the world with the condition.<span style="mso-spacerun: yes;"> </span>Slowly his muscles are turning to bone,
creating a second skeleton, rendering him immobile.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 11.0pt;">Since
Hayden was diagnosed in 2002, the gene that causes this horrific condition was
discovered in 2006, multiple pharmaceutical companies have started
collaborating to find a therapy. Currently, there are three active and
recruiting drug trials for a potential therapy.<span style="mso-spacerun: yes;">
</span>This is an amazing accomplishment considering that most genetic
conditions never find a therapy.<span style="mso-spacerun: yes;"> </span>There are
no genetic conditions that have a cure.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 11.0pt;">Please
consider donating to the IFOPA in honor of Hayden’s Hope.<span style="mso-spacerun: yes;"> </span><a href="https://ifopa.salsalabs.org/teamcurefop/p/haydenshope2ndannualdipsearunforfopresearchcurefop/index.html" target="_blank">Click here to donate</a> on line. Or if you wish
to send a check, please make the check out to the <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">International FOP Association</i></b>
and send to Hayden’s Hope / IFOPA c/o Megan Olsen 164 Tamalpais Avenue, Mill
Valley, CA. 94941.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 11.0pt;">The
International FOP Association is a 501c3 and has received a gold rating for
transparency from <a href="https://www.guidestar.org/profile/59-2918100">GuideStar</a>.</span><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com3tag:blogger.com,1999:blog-122611653958203765.post-50359658504689929312018-04-23T14:41:00.000-07:002018-05-07T14:41:45.208-07:00Celebrating 30 years of the IFOPA<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj589UEDA8XkO1erv-AMBR7FAASw7CP7ZDW8pi7yOu-YbOIV8ZCzxZB2YLsJceMHZGUwVJLhXKaXatupA1Q246gasG8u3WpZZ-zwthXBEUur946ZrZhNBXgNtQjdNulB-lA8R0Sbcac9mE/s1600/IFOPA_shirtdesign_ART2color.png" imageanchor="1" style="clear: left; display: inline !important; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="988" data-original-width="1187" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj589UEDA8XkO1erv-AMBR7FAASw7CP7ZDW8pi7yOu-YbOIV8ZCzxZB2YLsJceMHZGUwVJLhXKaXatupA1Q246gasG8u3WpZZ-zwthXBEUur946ZrZhNBXgNtQjdNulB-lA8R0Sbcac9mE/s320/IFOPA_shirtdesign_ART2color.png" width="320" /></a><br />
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Every year, April 23th is the FOP Awareness Day. This year is even more special because it marks the 30th anniversary of the founding of the International FOP Association by Jeannie Peeper.<br />
Click<a href="http://www.ifopa.org/history" target="_blank"> here</a> to read more about how this amazing women started it all with some letters.<br />
<br />Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com5tag:blogger.com,1999:blog-122611653958203765.post-49215573641637207572018-02-27T14:35:00.000-08:002018-05-07T14:35:27.829-07:00RARE Disease Day<div class="separator" style="clear: both; text-align: center;">
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<span style="background-color: white; color: #222222; font-family: "arial" , "helvetica" , sans-serif;">Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.</span><br />
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<span style="background-color: white; color: #5c5c5c;"><span style="font-family: "arial" , "helvetica" , sans-serif;">It is estimated that FOP affects about 3,500 people worldwide, or approximately one in two million people. Such statistics may be better grasped by the following example: if a large football stadium holds 100,000 fans, one would need to fill nearly 20 football stadiums to find one person who has FOP. At the present time, researchers are aware of approximately 800 people throughout the world who have FOP.</span></span><br />
<span style="background-color: white; color: #5c5c5c; font-family: "open sans" , , "helvetica" , sans-serif; font-size: 16px;"><br /></span>Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0tag:blogger.com,1999:blog-122611653958203765.post-91177658814290179142018-01-24T14:30:00.000-08:002018-05-07T14:30:46.525-07:00Hayden to enroll in the Clementia Drug Trial.<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;">John and I are so excited about this. Hayden is enrolling in the drug trial at UCSF in 2 weeks. </span><br />
<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;">Fingers crossed.</span><br />
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<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"><br /></span>Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0tag:blogger.com,1999:blog-122611653958203765.post-65558101873794159882017-12-27T14:25:00.000-08:002018-05-07T14:26:30.698-07:00FOP Family GatheringIn the beginning of December, the Int'l FOP Association hosted a family gathering in San Francisco. The IFOPA started hosting family gatherings over 10 years ago. The purpose is to bring together patients and families in a local region, in our case the West Coast, to learn about the latest FOP research, interact with the world's leading FOP clinicians and to connect with other patients, their families and caregivers.<br />
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There were people from Seattle, Sacramento, San Francisco, Fresno and Southern California. We also had some FOP'ers come from other parts of the country. It was nice to finally meet some of the friends I had made through the IFOPA's Facebook page in person. Felt like catching up with old friends.<br />
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We heard from two different pharmaceutical companies on their current research and drug trails. Hayden was also able to meet with the researchers and Dr. Frederick Kaplan to talk about his personal journey with FOP.<br />
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<br />Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0tag:blogger.com,1999:blog-122611653958203765.post-78613575606210778932017-05-31T11:13:00.000-07:002017-06-05T13:57:49.179-07:00Hayden's Hope - 2nd Annual Dipsea Run for FOP Research #cureFOP<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Please support me on my Dipsea run honoring Hayden and FOP research by donating to the International FOP Association. <a href="https://ifopa.salsalabs.org/teamcurefop/p/haydenshope2ndannualdipsearunforfopresearchcurefop" target="_blank">Click here </a></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><a href="https://ifopa.salsalabs.org/teamcurefop/p/haydenshope2ndannualdipsearunforfopresearchcurefop" target="_blank">to make a donation.</a></span><br />
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<tr><td class="tr-caption" style="font-size: 12.800000190734863px; text-align: center;">3rd flight of the Dipsea Steps in<br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">On Sunday June 11th, I will run the 107th Dipsea Race in honor of Hayden, to bring awareness for FOP and to raise funds for research. The Dipsea Race is a 7.4 mile trail race from Mill Valley through Muir Wood and ending in Stinson Beach. 600+ stairs are scattered throughout the race. </span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Fibrodysplasia Ossificans Progressiva is a rare and debilitating genetic condition that essentially turns muscle into bone, creating a second skeleton in the body. Currently there is no known cure. There are 800 people in the world affected with FOP - 285 of those people are here in the United States. </span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Hayden was diagnosed with FOP almost 14 years ago. Since then, the FOP lab at the University of Pennsylvania, has discovered that the ACVR1 gene causes FOP. Armed with that information, the FOP Lab in conjunction with the International FOP Association, have reached out to pharmaceutical companies to explore the possibility of a cure.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Hayden and his sister Elsa</td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Today, we are in Phase 2 drug trials with Clementia Pharmaceuticals for a drug called Palovarotine. The drug is showing much promise. Hayden is currently enrolled in Clementia's Natural History Study which will help researchers understand the progression of FOP and how an investigational treatment might affect the course of the disease. </span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">FOP is designated as a rare disease by National Organization for Rare Diseases. Few rare diseases have a therapy or cure. Most funds for research for a rare disease come soley from family fundraisers. The FOP lab at the Department of Orthopaedic Surgery at U of Penn has a budget of $1.5 million/year for research. 75% of these funds come from family fundraising and donations. 25% come from institutional support (NIH/NIAMS, Orthopaedic Research and Education Foundation). </span><br />
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<tr><td class="tr-caption" style="text-align: center;">Hayden and his cousins.</td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Please support me on my Dipsea run honoring Hayden and FOP research by donating to the International FOP Association. Click here to make a donation.<a href="https://ifopa.salsalabs.org/teamcurefop/p/haydenshope2ndannualdipsearunforfopresearchcurefop" target="_blank">https://ifopa.salsalabs.org/teamcurefop/p/haydenshope2ndannualdipsearunforfopresearchcurefop</a></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">To learn more about the International FOP Association go to <a href="http://www.ifopa.org/" target="_blank">www.ifopa.org</a>.</span><br />
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Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0tag:blogger.com,1999:blog-122611653958203765.post-12470178256611503782017-03-18T12:06:00.000-07:002017-03-18T12:06:02.601-07:00Dr. Frederick Kaplan honored by NORD with the 2017 Rare Impact Award<h3 class="post-title" style="box-sizing: border-box; color: #f47d31; font-family: Merriweather, sans-serif; font-size: 27px; line-height: 1.1; margin: 15px 0px;">
<a href="https://rarediseases.org/nord-announces-2017-rare-impact-award-honorees/" rel="bookmark" style="box-sizing: border-box; color: #f47d31; margin: 15px 0px; text-decoration: none;" title="Permalink to NORD Announces Honorees for the 2017 Rare Impact Awards">NORD Announces Honorees for the 2017 Rare Impact Awards </a></h3>
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Posted by Jennifer Huron</h6>
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<strong style="box-sizing: border-box;"><a href="https://rarediseases.org/rare-impact-awards-overview/ria_jointheconversation_date-2/" rel="attachment wp-att-29282" style="box-sizing: border-box; color: #0099cc; text-decoration: none;"><img alt="ria_jointheconversation_date" class="alignleft size-medium wp-image-29282" height="300" sizes="(max-width: 220px) 100vw, 220px" src="https://rarediseases.org/wp-content/uploads/2016/10/RIA_JoinTheConversation_date-1-220x300.png" srcset="https://rarediseases.org/wp-content/uploads/2016/10/RIA_JoinTheConversation_date-1-220x300.png 220x, https://rarediseases.org/wp-content/uploads/2016/10/RIA_JoinTheConversation_date-1.png 244x" style="border: 0px; box-sizing: border-box; float: left; margin: 8px 20px 5px 0px; opacity: 1; vertical-align: middle; visibility: visible;" width="220" /></a>Washington, D.C., March 15, 2017</strong>—The National Organization for Rare Disorders (NORD) today announced the people, organizations, and innovators who will be honored at the 2017 Rare Impact Awards on May 18 in Washington, D.C.</div>
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The Rare Impact Awards is a charity event that celebrates those who are boldly leading efforts to make a difference for people living with rare diseases. The benefit is hosted by NORD, the leading independent nonprofit organization representing the 30 million Americans with rare diseases, and brings together supporters of the organization’s mission.</div>
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“There are 30 million Americans living with rare diseases and more than half of these people are children,” said Peter L. Saltonstall, president and CEO of NORD. “This evening will showcase the remarkable stories of those are who creating a brighter future in which every person with a devastating medical condition has access to a cure.”</div>
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The 2017 honorees include patients <strong style="box-sizing: border-box;">Ellie McGinn</strong>, <strong style="box-sizing: border-box;">Christine Grube</strong>, and <strong style="box-sizing: border-box;">Brandon Hudgins</strong>; caregiver and White House Precision Medicine Initiative appointee<strong style="box-sizing: border-box;"> Matthew Might, Ph.D.</strong>; patient and advocate <strong style="box-sizing: border-box;">Beth Nguyen, R.N.</strong>; researchers and clinicians <strong style="box-sizing: border-box;">Robert Desnick, Ph.D.</strong>, <strong style="box-sizing: border-box;">M.D.</strong>, <strong style="box-sizing: border-box;">Frederick Kaplan, M.D.</strong>, and <strong style="box-sizing: border-box;">Cynthia Tifft, M.D.;</strong> national health leaders <strong style="box-sizing: border-box;">Rep. Diana DeGette (D-CO)</strong> and <strong style="box-sizing: border-box;">Sen. Johnny Isakson (R-GA)</strong>; <strong style="box-sizing: border-box;">A Twist of Fate – ATS</strong>, a nonprofit patient organization serving the Arterial Tortuosity Syndrome community; and industry innovators <strong style="box-sizing: border-box;">Advanced Accelerator Applications USA</strong>, <strong style="box-sizing: border-box;">Biogen</strong>, <strong style="box-sizing: border-box;">CSL Behring</strong>, <strong style="box-sizing: border-box;">Intercept Pharmaceuticals</strong>, <strong style="box-sizing: border-box;">Jazz Pharmaceuticals</strong>, and <strong style="box-sizing: border-box;">Sarepta Therapeutics</strong>.</div>
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Nationally touring music artist and winner of NPR Music’s 2016 Tiny Desk Contest, Gaelynn Lea, will perform original songs during the event in support of the millions of people with rare diseases. In addition to her work as a performing and recording artist, Gaelynn is a public speaker who uses her music as a platform to advocate for people with disabilities and to promote positive social change. The David Bach Consort will also perform.</div>
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The Rare Impact Awards serves as a NORD’s signature fundraiser to support the organization’s mission of providing education, advocacy, research, and patient support for the 1 in 10 Americans who are battling rare diseases. More than 350 distinguished guests are expected to attend.</div>
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The event is presented with support from benefactor sponsors Sanofi Genzyme and Shire and diamond sponsors BioMarin Pharmaceutical and CSL Behring.</div>
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<span style="background-color: white;">To purchase tickets, visit </span><a href="http://www.rareimpact.org/awards" style="box-sizing: border-box; color: #0099cc; text-decoration: none;" target="_blank">rareimpact.org/awards</a><span style="background-color: white;">.</span></div>
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Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0tag:blogger.com,1999:blog-122611653958203765.post-81115611532356849792017-02-28T11:55:00.000-08:002017-03-18T11:56:00.598-07:00Rare Disease Day 2017<div align="center" class="MsoNormal" style="background-color: white; color: #333333; font-family: georgia, serif; line-height: 20.799999237060547px; margin-bottom: 0pt; text-align: center;">
<b><span style="color: #222222; font-family: "arial" , sans-serif;">rare</span></b><span style="color: #222222; font-family: "arial unicode ms" , sans-serif;">/re(ə)r/</span><span style="color: #222222; font-family: "arial" , sans-serif;"> </span><span style="font-family: "arial" , sans-serif;">Adjective</span><span style="color: #222222; font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">1.) marked by unusual quality, merit or appeal, distinctive<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">2.) seldom occuring or found uncommonly<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">Typically when we think of something as rare, <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">we think of something special, <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">unique or hard to come by.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">Something spectacular such as the Hope Diamond,<span style="font-size: small;"><o:p></o:p></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFOAFB0JmC5HzO-FJgkfISrNMaSS8CRwwkc7McIN8YNStFcD2VL8Ce7cji_Plz2xmBqaCiSwLRU9ggtdZzLQ0zyg_JiWJw7hbkQeIxYd7TVTTMK0HyFFgkS7F67Kq3h8lR6aNzKX0vOX4/s1600/hope+diamond.jpg" imageanchor="1" style="color: #999999; margin-left: 1em; margin-right: 1em; text-decoration: none;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFOAFB0JmC5HzO-FJgkfISrNMaSS8CRwwkc7McIN8YNStFcD2VL8Ce7cji_Plz2xmBqaCiSwLRU9ggtdZzLQ0zyg_JiWJw7hbkQeIxYd7TVTTMK0HyFFgkS7F67Kq3h8lR6aNzKX0vOX4/s1600/hope+diamond.jpg" style="border: 1px solid rgb(204, 204, 204); padding: 4px;" /></a></div>
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<span style="font-size: x-small;"><br /></span> <span style="font-family: "arial" , sans-serif;">or discovering long, lost ancient ruins</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_IngR-vZoZewRERgJJl3T0AZiK4rXnV6Lk-Qii8Svlf9JGvq_k8jgidJU3gsPiyA9kYjmdEbSDIJAif6dmT3iT3sn3Vdwj3nrF4EnNaVvxnXcxWyfP7d8Ccxnxs67lb3DQPGH_FrX03I/s1600/camels+and+pyramids.jpg" imageanchor="1" style="color: #999999; margin-left: 1em; margin-right: 1em; text-decoration: none;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_IngR-vZoZewRERgJJl3T0AZiK4rXnV6Lk-Qii8Svlf9JGvq_k8jgidJU3gsPiyA9kYjmdEbSDIJAif6dmT3iT3sn3Vdwj3nrF4EnNaVvxnXcxWyfP7d8Ccxnxs67lb3DQPGH_FrX03I/s1600/camels+and+pyramids.jpg" style="border: 1px solid rgb(204, 204, 204); padding: 4px;" /></a></div>
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<span style="font-family: "arial" , sans-serif;">or even a fossilized sand dollar </span></div>
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<span style="font-family: "arial" , sans-serif;">such as the one I found recently on the beach.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0iNym-CuYovAPj8sIKexmbFjmsHo_5nkHEYUFkDt0Zhy7BoZHmHwMDG1PDboT2M-L82LM1hzlJ7zrqKORCdc1gIk1x6VS1t3gt629xKp6Jou-mt4eIk1TAqWzq5CjlePulVfugcP6WVM/s1600/Sand+Dollar+Fossil.JPG" imageanchor="1" style="color: #999999; margin-left: 1em; margin-right: 1em; text-decoration: none;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0iNym-CuYovAPj8sIKexmbFjmsHo_5nkHEYUFkDt0Zhy7BoZHmHwMDG1PDboT2M-L82LM1hzlJ7zrqKORCdc1gIk1x6VS1t3gt629xKp6Jou-mt4eIk1TAqWzq5CjlePulVfugcP6WVM/s320/Sand+Dollar+Fossil.JPG" style="border: 1px solid rgb(204, 204, 204); padding: 4px;" width="240" /></a></div>
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<span style="font-family: "arial" , sans-serif;">Rarely, no pun intended, do we like to associate </span></div>
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<span style="font-family: "arial" , sans-serif;">the word "rare" with an illness.</span><span style="font-family: "arial" , sans-serif;"> </span></div>
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<span style="font-family: "arial" , sans-serif;">However there is nothing spectacular about </span></div>
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<span style="font-family: "arial" , sans-serif;">receiving a diagnosis of a rare disease. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">It is, in a word, devastating.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">Less than 5% of rare diseases have </span><br />
<span style="font-family: "arial" , sans-serif;">any therapies or treatments.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">There are 7,000 identified rare diseases with no cures.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">350 million people have a rare disease. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">That is <b>more</b> than all those with </span><br />
<span style="font-family: "arial" , sans-serif;">Cancer and AIDS combined.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">Finding funding for research, advocacy </span><br />
<span style="font-family: "arial" , sans-serif;">and community outreach <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">for these orphan diseases, <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">as they are called, is beyond challenging.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">However within this rare community of people, <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">there is something special about a rare disease, </span><br />
<span style="font-family: "arial" , sans-serif;">the people.</span><br />
<span style="font-family: "arial" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif;"><b>These special people are… </b><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">...the scientists who study it,</span></div>
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigaQR-kEIUCG2WH-V-hRJxX7m1NoUjUKMUw8TxL87x7vpeY7wxVmo3ZhayX3z1M5s5Q214L-33N79DeWNU84r9eVO6vbmOdxy5wE2vL5VLMbrJZyvHUL0MsXyrymInJRpyRm1Pmf0M9Hs/s1600/three+devoted+scientists.jpg" imageanchor="1" style="color: #999999; margin-left: auto; margin-right: auto; text-decoration: none;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigaQR-kEIUCG2WH-V-hRJxX7m1NoUjUKMUw8TxL87x7vpeY7wxVmo3ZhayX3z1M5s5Q214L-33N79DeWNU84r9eVO6vbmOdxy5wE2vL5VLMbrJZyvHUL0MsXyrymInJRpyRm1Pmf0M9Hs/s1600/three+devoted+scientists.jpg" style="border: none; padding: 0px;" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 10.399999618530273px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><i>Researchers in the FOP lab at University of Pennsylvania.</i></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><i>Meiqi Xu, Drs Frederick Kapkab and Eileen Shore</i></span></td></tr>
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<span style="font-family: "arial" , sans-serif;"><br /></span><span style="font-family: "arial" , sans-serif;">...the patients and families who live with it</span></div>
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgb-XHRSIAIZI4q6-gAzn0CK5Q20PgPJUYDbsrej9rPmfHWl8l2zwItxfW6J2xSsa-NVRTcYwp7NbMoM-rc31O_7hWEaXjPId2gafvnQeBXqlAoDTYwAvS4PC6mtIu0scGUPJccFHt4ZAQ/s1600/Hayden+FarWest+Skiing.png" imageanchor="1" style="color: #999999; margin-left: auto; margin-right: auto; text-decoration: none;"><img border="0" height="193" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgb-XHRSIAIZI4q6-gAzn0CK5Q20PgPJUYDbsrej9rPmfHWl8l2zwItxfW6J2xSsa-NVRTcYwp7NbMoM-rc31O_7hWEaXjPId2gafvnQeBXqlAoDTYwAvS4PC6mtIu0scGUPJccFHt4ZAQ/s320/Hayden+FarWest+Skiing.png" style="border: none; padding: 0px;" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 10.399999618530273px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><i>Hayden Pheif, skiing in 2008, at the Far West</i></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><i>Disabled Sports Center in Alpine Meadows, CA</i></span></td></tr>
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<div style="color: #333333; font-family: georgia, serif; line-height: 20.799999237060547px; text-align: center;">
<span style="font-family: "arial" , sans-serif;">...the amazing people who have only yet learned of FOP and</span><br />
<span style="font-family: "arial" , sans-serif;"> will go to </span><span style="font-family: "arial" , sans-serif;">"great lengths" to fundraise for research</span></div>
<div style="color: #333333; font-family: georgia, serif; line-height: 20.799999237060547px; text-align: center;">
<span style="font-family: "arial" , sans-serif;">which will help to find a cure</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4K0UEaMWwn1zMMBHMjFREKawu0LXYrVbdZPKgNWBOkOczV-TZ2Ry8GjdmXbC7ELUyyyX3CMqekfGvblsZZC38nvqgO1A8p9Sz_wV24qQDusxBCnVidnMlrUyBe3M7TjSPP7L61TFnbY0/s1600/gwg+finish.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4K0UEaMWwn1zMMBHMjFREKawu0LXYrVbdZPKgNWBOkOczV-TZ2Ry8GjdmXbC7ELUyyyX3CMqekfGvblsZZC38nvqgO1A8p9Sz_wV24qQDusxBCnVidnMlrUyBe3M7TjSPP7L61TFnbY0/s1600/gwg+finish.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.800000190734863px;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><i>Team "Girls with Grit" ran the Napa Valley Ragnar<br />(36 hour - 206 Mile) Relay in September to as a fundraiser<br />for Hayden's Hope</i></span>.</td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;"><br /></span></div>
<div style="color: #333333; font-family: georgia, serif; line-height: 20.799999237060547px; text-align: center;">
<span style="font-family: "arial" , sans-serif;">...Jeannie Peeper, the most inspirational woman I know.</span></div>
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<span style="font-family: "arial" , sans-serif;">Jeannie, who has FOP, started the International FOP </span></div>
<div style="color: #333333; font-family: georgia, serif; line-height: 20.799999237060547px;">
<span style="font-family: "arial" , sans-serif;">Association 25 years ago. Her goal was and</span></div>
<div style="color: #333333; font-family: georgia, serif; line-height: 20.799999237060547px;">
<span style="font-family: "arial" , sans-serif;">is to raise awareness, provide outreach to</span></div>
<div style="color: #333333; font-family: georgia, serif; line-height: 20.799999237060547px;">
<span style="font-family: "arial" , sans-serif;">families and those effected with FOP as well as</span></div>
<div style="color: #333333; line-height: 20.799999237060547px;">
<span style="font-family: "arial" , sans-serif;">to provide a 501c to support fundraisers for research. </span><br />
<span style="font-family: "arial" , sans-serif;">Today, because of Jeannie,</span></div>
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<span style="font-family: "arial" , sans-serif;">Clementia Pharmaceuticals is in Stage Two of</span></div>
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<span style="font-family: "arial" , sans-serif;">Drug Trials for a therapy for those with FOP.</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF01G6deBS_eVAa8KIghIzWPHVu6HRegov988K_QRt3ITIoZ3MAAgiWolFHQdzzyMGrWldVR6jsYDEhsclbITNCZMMbZe5ZAdHQex1QM80HkAPwU-Z6bzwTMw5UzHXSTGm4TaA_Qo44hM/s1600/Jeannie_Peeper_and_Dr_Kaplan_25th_Anniversary_2013.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="230" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF01G6deBS_eVAa8KIghIzWPHVu6HRegov988K_QRt3ITIoZ3MAAgiWolFHQdzzyMGrWldVR6jsYDEhsclbITNCZMMbZe5ZAdHQex1QM80HkAPwU-Z6bzwTMw5UzHXSTGm4TaA_Qo44hM/s1600/Jeannie_Peeper_and_Dr_Kaplan_25th_Anniversary_2013.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.800000190734863px;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><i>Jeannie Peeper with Dr. Frederick Kaplan,<br />head of FOP research at U of Penn, at the 25th<br />anniversary IFOPA celebration.</i></span></td></tr>
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<span style="font-family: "arial" , sans-serif;"><br /></span><span style="font-family: "arial" , sans-serif;">These people are rare in a very special way.</span><br />
<span style="font-family: "arial" , sans-serif;">They give us hope.</span><br />
<span style="font-family: "arial" , sans-serif;"><br /></span><span style="font-family: "arial" , sans-serif;">Even though the people afflicted with rare diseases <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">create a very large community, <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">their conditions remain largely unknown <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">to the vast majority of the world population. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">Today, February 28th, <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">is <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;"><b>Global Rare Disease Day</b>.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">This day was created in the United States <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">by the National Organization for Rare Diseases (NORD) <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">to raise awareness and </span></div>
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<span style="font-family: "arial" , sans-serif;">increase advocacy for these special diseases,<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">as well as to provide hope to the </span></div>
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<span style="font-family: "arial" , sans-serif;">patients and families afflicted by them.</span></div>
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<span style="color: #0b5394; font-size: small;"><span style="font-family: "arial" , sans-serif;"><span style="color: #333333; display: block;">Please join me in by honoring those who</span></span><span style="font-family: "arial" , sans-serif;"><span style="color: #333333; display: block;">courageously live with a</span></span></span></h3>
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<span style="color: #0b5394;"><span style="font-family: "arial";"><span style="color: #333333; display: block; font-size: small;">Rare Disease by donating to the IFOPA</span><span style="color: #333333; display: block; font-size: small;"><br /></span></span></span></h3>
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Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0tag:blogger.com,1999:blog-122611653958203765.post-42838989047448968972016-10-31T12:13:00.000-07:002017-03-18T12:13:57.188-07:00International FOP Association Hosts Drug Development Forum<div style="font-family: Trebuchet, Verdana, Arial, sans-serif; font-size: 13.203081130981445px; margin-top: 0.7em;">
The IFOPA hosted the second Drug Development Forum Oct. 24 to 25 in Boston, Mass. The very popular Forum brings together both academic and pharmaceutical researchers to address important questions and challenges of therapeutic development for FOP.</div>
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The meeting’s agenda was designed to share learnings from active research and drug development efforts worldwide, stimulate new ideas to help advance therapeutic development as efficiently as possible, and facilitate collaboration among interested researchers. (Photo - Left to right: Sienna Otto, Dr. Kaplan and Raina Halford)</div>
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Moira Liljesthrom, IFOPA Board Member and Chair of the IFOPA Research Committee, says these events are important because they “bring together researchers, pharmaceutical companies, clinicians and FOP families to facilitate the exchange, the discussion and the sharing of information…In doing so, Forums promote the understanding of FOP and accelerate the way to a treatment.”</div>
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The Forum also included two patient panels. Ensuring that researchers hear the experience of those living with FOP, as well as their perspective, is critical to research, drug development and clinical trials.</div>
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The next Drug Development Forum will be held in Italy in 2017. Learn more about the academic institutions and pharmaceutical companies that were represented at the <span style="color: blue; text-decoration: underline;"><strong><a href="http://files.constantcontact.com/6e915feb001/1bcd12ce-1d10-410b-969a-da79cf615d1e.pdf?ver=1479314112000" style="color: blue;" target="_blank">event</a></strong></span><span style="color: blue;">,</span> see feedback on the Forum, view <span style="color: blue;"><a href="https://flic.kr/s/aHskP4gWFt" style="color: blue; text-decoration: none;" target="_blank"><span style="cursor: pointer; text-decoration: underline;"><span style="cursor: pointer;"><strong>photos</strong></span></span> </a></span>and see a presentation on Forum <a href="http://files.constantcontact.com/6e915feb001/7c387597-9149-483d-86c6-627bdb9ccaf9.pdf?ver=1479314152000" style="color: #006699; text-decoration: none;" target="_blank"><span style="cursor: pointer; text-decoration: underline;"><span style="color: blue; cursor: pointer;"><strong>outcomes</strong></span></span></a>.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgz6w1nHEne5qP-Qzf67ECCB5l7tr8LyrKTy6lPpBQu-I-ZmhhP7hx8VgSG-vceFG1NkeIkv9MOeJJ2eSdh0IizN_gSqk_i8lA_SMdvwZbGrYe1CvGbgIVqKvwRpJ48nkRB8F98oJzU07E/s1600/Screenshot+2017-03-18+12.12.14.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgz6w1nHEne5qP-Qzf67ECCB5l7tr8LyrKTy6lPpBQu-I-ZmhhP7hx8VgSG-vceFG1NkeIkv9MOeJJ2eSdh0IizN_gSqk_i8lA_SMdvwZbGrYe1CvGbgIVqKvwRpJ48nkRB8F98oJzU07E/s640/Screenshot+2017-03-18+12.12.14.png" width="394" /></a></div>
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Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0tag:blogger.com,1999:blog-122611653958203765.post-62382887109098767232016-06-30T12:01:00.000-07:002017-03-18T12:02:14.910-07:00Thank you<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Thank you so much to all of the supporters of Hayden's Hope Dipsea run. We raised $10,000 for the International FOP Association (IFOPA). The IFOPA provides research funds, education and support to patients and family. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Below is a small snapshot of programs and services that the IFOPA offers for the FOP community.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjem0ODSNW4lpVxG_q5YgGXHxmim7f0IkKxpEpMwBtaAt39GmKL1WB7rCxVTV8y4gxYeg866rx_W3WDWXB9vmNLFZ8JNqKdwn3kvndNmx74f1CSN_47JYGBttGP_Ekf2NyKEv6hSL5v0YQ/s1600/2016-FactsInBrief_English_8-31-16.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjem0ODSNW4lpVxG_q5YgGXHxmim7f0IkKxpEpMwBtaAt39GmKL1WB7rCxVTV8y4gxYeg866rx_W3WDWXB9vmNLFZ8JNqKdwn3kvndNmx74f1CSN_47JYGBttGP_Ekf2NyKEv6hSL5v0YQ/s400/2016-FactsInBrief_English_8-31-16.jpg" width="308" /></a></div>
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<br />Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0tag:blogger.com,1999:blog-122611653958203765.post-82887763922739169132016-05-03T14:26:00.000-07:002016-06-07T15:21:36.588-07:00Running in Honor of Hayden<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Please support me on my Dipsea run honoring Hayden and FOP research by donating to the International FOP Association. Click </span><a href="http://www.ifopa.org/how-to-help/60-donation-forms/608-online-donation-haydens-hope-in-honor-of-hayden-pheif.html" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;" target="_blank">here</a><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> to make a donation.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoa6Cb9A5x3rFtL8lIyrIFN8CYI5MmkY3fzITpJ2tTELgLu2ohc0s3CDRNOYtWZqtpnzspvlg_QPBB7QqcOMqTvNtlEUrhmNlwLVDOgLQRWr4iAnNAjU-61fYjS3Zv3X4ky_05SEbMTjk/s1600/Dipsea+steps.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoa6Cb9A5x3rFtL8lIyrIFN8CYI5MmkY3fzITpJ2tTELgLu2ohc0s3CDRNOYtWZqtpnzspvlg_QPBB7QqcOMqTvNtlEUrhmNlwLVDOgLQRWr4iAnNAjU-61fYjS3Zv3X4ky_05SEbMTjk/s320/Dipsea+steps.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">3rd flight of the Dipsea Steps in<br />
Mill Valley</td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">On Sunday June 12th, I will run the 106th Dipsea Race in honor of Hayden, to bring awareness for FOP and to raise funds for research. The Dipsea Race is a 7.4 mile trail race from Mill Valley through Muir Wood and ending in Stinson Beach. 600+ stairs are scattered throughout the race. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Fibrodysplasia Ossificans Progressiva is a rare and debilitating genetic condition that essentially turns muscle into bone, creating a second skeleton in the body. Currently there is no known cure. There are 800 people in the world affected with FOP - 285 of those people are here in the United States. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Hayden was diagnosed with FOP almost 14 years ago. Since then, the FOP lab at the University of Pennsylvania, has discovered that the ACVR1 gene causes FOP. Armed with that information, the FOP Lab in conjunction with the International FOP Association, have reached out to pharmaceutical companies to explore the possibility of a cure.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkjp0YYiLVFr9OgG-uKuqrPqCphXL4agsos8lTSKRwAE7JGQ7WN57z90tOmswwbOxTHDFWrBRIk6tDTT_pAHGOe5sPdwn9UcN2XyycWDyuQ3N_UspC3Ok95XsE7Mh7nxQBRfNVMxwarT0/s1600/Hayden+%2526+Elsa.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkjp0YYiLVFr9OgG-uKuqrPqCphXL4agsos8lTSKRwAE7JGQ7WN57z90tOmswwbOxTHDFWrBRIk6tDTT_pAHGOe5sPdwn9UcN2XyycWDyuQ3N_UspC3Ok95XsE7Mh7nxQBRfNVMxwarT0/s320/Hayden+%2526+Elsa.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hayden and his sister Elsa<br />
Christmas 2015.</td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Today, we are in Phase 2 drug trails with Clementia Pharmaceuticals for a drug called Palovarotine. The drug is showing much promise. Hayden is currently in the process of enrolling in Clementia's Natural History Study which will help researchers understand the progression of FOP and how an investigational treatment might affect the course of the disease. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">FOP is designated as a rare disease by National Organization for Rare Diseases. Few rare diseases have a therapy or cure. Most funds for research for a rare disease come soley from family fundraisers. The FOP lab at the Department of Orthopaedic Surgery at U of Penn has a budget of $1.5 million/year for research. 75% of these funds come from family fundraising and donations. 25% come from institutional support (NIH/NIAMS, Orthopaedic Research & Education Foundation). </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil-jrMzFFtFfKgZ9lLMSZL6xb4ELLst4ev6SCN9LvN2BTeVzWadeIBxk3oh2jZ0wcWSbmdjja-ZhfIuCE83yzf1Tp82TqFRAtWR5Pa_6IcK0lB46KjypHFTp7ft2IECrrbQC7UBg_tq-k/s1600/16th+Birthday.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil-jrMzFFtFfKgZ9lLMSZL6xb4ELLst4ev6SCN9LvN2BTeVzWadeIBxk3oh2jZ0wcWSbmdjja-ZhfIuCE83yzf1Tp82TqFRAtWR5Pa_6IcK0lB46KjypHFTp7ft2IECrrbQC7UBg_tq-k/s320/16th+Birthday.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hayden and his cousins on <br />
his 16th birthday this year.</td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Please support me on my Dipsea run honoring Hayden and FOP research by donating to the International FOP Association. Click <a href="http://www.ifopa.org/how-to-help/60-donation-forms/608-online-donation-haydens-hope-in-honor-of-hayden-pheif.html" target="_blank">here</a> to make a donation.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">To learn more about the International FOP Association go to <a href="http://www.ifopa.org/" target="_blank">www.ifopa.org</a>.</span><br />
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Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0tag:blogger.com,1999:blog-122611653958203765.post-76014414933560846102016-05-02T17:45:00.002-07:002016-05-02T17:45:30.386-07:00Quieting cells' low-oxygen alarm stops flare-ups in rare bone disorder<div class="entry" style="background-color: white; box-sizing: border-box; color: #333333; font-family: 'Open Sans', 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; line-height: 23px; widows: 1;">
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<span style="font-size: 12.5px; font-weight: 600; text-transform: uppercase;">PUBLIC RELEASE: </span><time datetime="1462161600" style="box-sizing: border-box; font-size: 12.5px; font-weight: 600; text-transform: uppercase;">2-MAY-2016</time></div>
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Quieting cells' low-oxygen alarm stops flare-ups in rare bone disorder</h1>
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<span style="color: #2b2b2b; text-transform: uppercase;">UNIVERSITY OF PENNSYLVANIA SCHOOL OF MEDICINE</span></div>
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PHILADELPHIA - The cellular response to the lack of oxygen fans the flames of flare-ups in a rare bone disorder. In fibrodysplasia ossificans progressiva (FOP), a mutation triggers bone growth in muscles, which limits motion, breathing, and swallowing, among a host of progressive symptoms.</div>
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Scientists from the Center for Research in FOP and Related Disorders at the Perelman School of Medicine at the University of Pennsylvania and colleagues examined the critical role of tissue hypoxia, or oxygen starvation, in the induction and amplification of FOP lesions, also called flare-ups.</div>
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The research team, led by Haitao Wang, PhD, a senior research investigator, Robert Pignolo, MD, PhD, an associate professor in the division of Geriatrics and the Ian Cali Distinguished Clinician-Scientist at the Center, and Frederick S. Kaplan, MD, the Isaac & Rose Nassau Professor of Orthopaedic Molecular Medicine and Chief of the division of Molecular Orthopaedic Medicine, published their findings in the <em style="box-sizing: border-box;">Journal of Bone and Mineral Research</em> this month.</div>
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They showed that cells from FOP lesions in humans and in a mouse model of FOP are markedly oxygen-starved and that this hypoxia triggers a molecular alarm orchestrated by the HIF-1α protein. Surprisingly, HIF-1α dramatically amplifies the already mutant bone morphogenetic protein (BMP) signaling in the oxygen-starved cells and stimulates heterotopic ossification, the abnormal metamorphosis of muscle to bone that occurs in FOP. Most importantly, when the team disabled the HIF-1α cellular alarm, BMP signaling in human FOP bone progenitor cells was restored to levels comparable to cells in normal oxygen. This adjustment profoundly reduced heterotopic ossification and the resulting disability in the FOP mouse.<span style="box-sizing: border-box; font-weight: 600;"></span></div>
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<span style="box-sizing: border-box; font-weight: 600;">A Tantalizing Lead</span></div>
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In 2006, Penn researchers led by Kaplan and Eileen Shore, PhD, the Cali-Weldon Professor of FOP Research and a co-author on the current study, discovered how a mutation in the gene for a BMP receptor called Activin Receptor A type I (ACVR1) occurs in all individuals who have classic FOP. The mutation in ACVR1 (mACVR1) causes the ACVR1 protein, a cell surface receptor, to be mildly overactive, thereby stimulating the BMP pathway continuously, like a faucet that drips water when it should be turned off. However, despite the presence of mACVR1 in all FOP patients, individuals with FOP do not form bone continuously but rather episodically during flare-ups, an important clue that suggested that something else fuels the process of lesion formation.</div>
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A tantalizing lead came from studying FOP lesions themselves. Importantly, all FOP flare-ups, whether spontaneous or triggered by trauma, are associated with inflammation, also a well-known cause of oxygen starvation in cells.</div>
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"Hypoxia can occur for many reasons, but in early FOP flare-ups, we speculated that hypoxia might result from the inflammatory microenvironment in lesions," Kaplan said. "This happens when oxygen supply to the damaged tissue is impaired and oxygen demand by the damaged cells greatly exceeds its supply."</div>
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Indeed, every cell continuously produces HIF-1α but rapidly destroys it when the cell has an adequate supply of oxygen. When a cell is oxygen starved, the enzymes that inactivate HIF-1α instantly cease to function, allowing HIF-1α to escape destruction, enter the nucleus of the cell, and trigger an alarm that instructs genes to adapt to a low-oxygen microenvironment. This chain of events allows the cell to survive.</div>
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The current study showed that HIF-1α inhibitors, specifically the cancer drug imatinib (Gleevec), the natural product apigenin, and the small molecule PX-478, potently inhibit dysregulated BMP signaling induced by HIF-1α in cells, as well as heterotopic ossification following tissue injury in a mouse model of FOP.</div>
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"The implications for targeted clinical trials and for compassionate clinical use of HIF-1α inhibitors in the treatment of FOP flare-ups are promising, however we need more data on dosing, duration, timing, rebound, resistance and long-term safety," Pignolo said.</div>
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"Our study provides profound insight into the role of cellular hypoxia in FOP flare-ups and shows that cellular oxygen sensing through HIF-1α is a critical regulator of the BMP pathway and heterotopic ossification in FOP," Kaplan said.</div>
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The findings support the hypothesis that FOP lesions thrive in a hypoxic microenvironment, not simply due to oxygen deprivation, but also because of a maladaptive response to hypoxia by the HIF-1α molecular alarm, similar to that seen in cancer. Most importantly for individuals with FOP, the study identifies HIF-1α as a therapeutic target -- knowledge that will likely contribute to the development of more effective treatments for FOP and related common disorders of heterotopic ossification.</div>
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This research was supported in part by the International Fibrodysplasia Ossificans Progressiva Association, the Center for Research in FOP and Related Disorders, the Ian Cali Endowment for FOP Research, the Whitney Weldon Endowment for FOP Research, the Cali-Weldon FOP Pre-Clinical Drug Testing Program, the Brinkman Family, the Isaac and Rose Nassau Professorship of Orthopaedic Molecular Medicine, the Cali-Weldon Research Professorship in FOP, the Ian Cali Clinical and Research Scholarship, the Rita Allen Foundation, the Roemex Fellowship for FOP Research, the McGuire Fund for FOP Research, the Ashley Martucci Fund for FOP Research, the Penn Center for Musculoskeletal Disorders, and the National Institutes of Health (NIH R01-AR41916).</div>
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reprint from <a href="http://www.eurekalert.org/pub_releases/2016-05/uops-qcl050216.php">http://www.eurekalert.org/pub_releases/2016-05/uops-qcl050216.php</a></div>
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Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0tag:blogger.com,1999:blog-122611653958203765.post-5169110150958902202016-04-23T16:31:00.000-07:002016-04-23T17:02:25.341-07:0010 Years Ago Today<div class="MsoNormal">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">In early, 2006, I
heard the words through the telephone, “Megan, they have discovered the gene.”
It was a phone call from the then president of the board for the IFOPA, Amanda
Cali, telling me that the FOP lab had discovered that the ACVR1 gene is the
cause of FOP.<span style="mso-spacerun: yes;"> </span>I can’t tell you the emotions
that ran through me.<span style="mso-spacerun: yes;"> </span>I was so ecstatic;
all I could do was cry.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "avenir light";"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">The lead researcher
at the FOP Lab at U of Penn, Dr.Frederick Kaplan, had been in Germany for work.
He received a call from Meiqui Xu who was part of the research team at U of
Penn. Meiqui told Dr. Kaplan that she was certain she had found the gene that
caused FOP. Cautiously the team began
the process of double and triple checking their findings until they were
certain that the <a href="http://www.ifopa.org/news-and-events/latest-news1/603-meet-the-researcher-who-discovered-the-fop-gene.html" target="_blank">ACVR1gene was in fact the one, which causes FOP.</a></span><span style="font-family: "avenir light";"><o:p></o:p></span></span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr2Po7knQzSo7cJz3BY2WmpTwZJjeuIKUz8iz2oROCMinBME4MO17dS5voNY6PmIm3DHAzHsE5rC4vU7Ai56aQ8ZgCHE1y-xMjw3Vzz3cg4GAts4XKv4cZ-a7nq6crTiQ4KOW6sGUz7j0/s1600/acvr1.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="192" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr2Po7knQzSo7cJz3BY2WmpTwZJjeuIKUz8iz2oROCMinBME4MO17dS5voNY6PmIm3DHAzHsE5rC4vU7Ai56aQ8ZgCHE1y-xMjw3Vzz3cg4GAts4XKv4cZ-a7nq6crTiQ4KOW6sGUz7j0/s320/acvr1.png" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">ACVR1 Gene</span></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">On April 23, 2006, ten years ago today, Penn Medicine held a </span><a href="http://www.uphs.upenn.edu/news/news_releases/apr06/FOP.htm" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;" target="_blank">press conference</a><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> to announce the findings.</span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">
</span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I was honored to be able to be in Pennsylvania to share the joy and celebrate
with Jeannie Peeper, the founder of the IFOPA, Dr. Kaplan and Dr. Shore, along
with the researchers from the FOP Lab and of course many of the families from
the FOP community.</span></div>
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<b style="font-family: 'Avenir Light';"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">In honor of that important announcement, April 23<sup>rd</sup> became International FOP Awareness Day.</span></b><span style="font-family: "avenir light";"><br /></span><span style="font-family: "avenir light";"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr1CQfFakVH7objnR6K6lTsQKdnLtj3PTqiz5d0k1uzcn62s-XcjV35MhxOwqmQu0KODyX2GJhi6A04HP783vnuWG-bq0YSApErFYDmHCt_-tauD_G5cs1bi_B7Pynnk3LLmTMVKg2Eb4/s1600/gene+discovery-proc.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="211" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr1CQfFakVH7objnR6K6lTsQKdnLtj3PTqiz5d0k1uzcn62s-XcjV35MhxOwqmQu0KODyX2GJhi6A04HP783vnuWG-bq0YSApErFYDmHCt_-tauD_G5cs1bi_B7Pynnk3LLmTMVKg2Eb4/s320/gene+discovery-proc.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Post Press Conference with other FOP Moms - from left to right<br />Hillary Weldon, Amanda Cali, Jennifer Snow and Jerry Licht.</span></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">After Hayden was
diagnosed in 2002, I started researching about FOP and rare diseases. I
learned words like “orphan drugs”, “mouse model”, “humanitarian exception”, “BNP
Receptors”, “Noggin Gene”and “heterotopic” to name a few. </span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Of all
the words that were new to me one word kept me going, “HOPE”. </span><o:p></o:p></span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Of the 7,000 rare
diseases listed in the <a href="http://rarediseases.org/for-patients-and-families/information-resources/rare-disease-information/" target="_blank">NORD directory</a>, only 4% have a cure or therapy. Today, the IFOPA is in drug
trials with Clementia Pharmaceuticals with a drug that shows strong hope of
bringing a therapy for our FOP Community.<span style="mso-spacerun: yes;">
</span>Recently <span style="color: black; mso-themecolor: text1;">the </span></span><span style="color: black; font-family: "avenir light"; mso-bidi-font-family: Lato-Regular; mso-themecolor: text1;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><a href="http://clementiapharma.com/3601-2/" target="_blank">Journal of Bone and Mineral Research</a> published online a non-Clementia sponsored study
describing palovarotene’s novel, beneficial effects on spontaneous heterotopic
ossification, mobility, and skeletal growth in mouse models of fibrodysplasia
ossificans progressiva.</span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><o:p></o:p></span></span></span></div>
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<span style="color: black; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; mso-bidi-font-family: Lato-Regular; mso-themecolor: text1;">So much has happened since
Hayden’s diagno</span><span style="color: black; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; mso-bidi-font-family: Lato-Regular; mso-themecolor: text1;">sis. It is truly amazing. What a journey it has been. Thank you
all for your support.<o:p></o:p></span></div>
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<b style="font-family: 'helvetica neue', arial, helvetica, sans-serif;"><i>#FeelingBlessed</i></b></div>
Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0tag:blogger.com,1999:blog-122611653958203765.post-60020010802038060942016-02-29T10:10:00.003-08:002016-02-29T10:11:52.337-08:00World Rare Disease Day 2106<div align="center" class="MsoNormal" style="background-color: white; line-height: 20.799999237060547px; margin-bottom: 0pt; text-align: center;">
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<span style="font-family: "arial" , sans-serif;">Today, February 29th, <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">is <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;"><b>World Rare Disease Day</b></span></div>
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<span style="font-family: "arial" , sans-serif;">It seems fitting that today the 40th and last participant has enrolled into the Clementia Phase 2 clinical trail that is investigating palovartene for the treatment of FOP.</span></div>
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<span style="color: #333333; font-family: "arial" , sans-serif;">When Hayden was diagnosed September 11, 2002, hope seemed to </span><br />
<span style="color: #333333; font-family: "arial" , sans-serif;">very, very far away. However the following pretty much sums up the FOP Community.</span><br />
<span style="color: #333333; font-family: "arial" , sans-serif;">"Alone we are rare. Together we are strong."</span><br />
<span style="color: #333333; font-family: "arial" , sans-serif;"><br /></span>
<span style="color: #333333; font-family: "arial" , sans-serif;">Nothing demonstrates this more that the determination </span><span style="color: #333333; font-family: "arial" , sans-serif;">of our families who fundraise, </span><span style="color: #333333; font-family: arial, sans-serif;">our board members who guide us along our mission and the researchers who are continually on a quest to discover a cure.</span><br />
<span style="color: #333333; font-family: "arial" , sans-serif;"><br /></span>
<span style="color: #333333; font-family: "arial" , sans-serif;">World Rare Disease Day is an annual observance held on the last day of February to raise awareness for rare diseases and improve access to treatments and medical representaiotn for individuals with rare diseases and their families. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMDkIo70XBC9MV_mleRRWZax-QvfBJBYCS1DuQW67OHbiXa7c9e_25TmeeofgdfYnqxpDqi6bGyahW38x0x9QKf2XZOvSsscGT9JTbGINmgZgfVblzfTYI1JYSzLswdNHliC00j0l-eMs/s1600/Hayden.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMDkIo70XBC9MV_mleRRWZax-QvfBJBYCS1DuQW67OHbiXa7c9e_25TmeeofgdfYnqxpDqi6bGyahW38x0x9QKf2XZOvSsscGT9JTbGINmgZgfVblzfTYI1JYSzLswdNHliC00j0l-eMs/s320/Hayden.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hayden in Tahoe - 4th of July 2015</td></tr>
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Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0tag:blogger.com,1999:blog-122611653958203765.post-66437261957767195832016-02-01T12:25:00.000-08:002017-03-18T12:27:59.230-07:002016 Competitive Research Grant Program for FOP Research<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">In 2015 the IFOPA launched the Competitive Research Grant Program, to encourage collaborative research on many venues to further advance our search for a cure to FOP. </span><div>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The 2016, the IFOPA gave out three research grants. Below are the winners.</span></div>
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<h3 style="font-family: Trebuchet, Verdana, Arial, sans-serif;">
<span style="font-size: small;">Allosteric inhibitors of ALK2 for FOP therapy</span></h3>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Principal Investigator: Alex Bullock, PhD<br />Co-investigators: Paul Brennan, PhD and Frank von Delft, PhD<br />Institution: Oxford University, United Kingdom<br />Award Amount: $26,421<br />This grant is funded in partnership with FOP Friends<sup>®</sup> UK.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Project Description: The University of Oxford FOP Research Team plans to develop a second generation ALK2/ACVR1 inhibitor for FOP therapy by targeting novel allosteric sites that allow for exquisite target selectivity and further improved drug safety. The team will screen a drug fragment library using X-ray crystallography and solve hundreds of 3D structures of the ALK2/ACVR1 protein to identify drug fragments that bind outside the ATP pocket and lock the kinase domain in an inactive state. Further chemistry will then be used to optimize these fragments into potent inhibitors that can block heterotopic ossification (HO) in FOP.</span></div>
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<span style="font-size: small;"><br /></span></h3>
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<span style="font-size: small;">Development of antisense oligonucleotide therapy for FOP</span></h3>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Principal Investigator: Oana Caluseriu, MD and Toshifumi Yokota, PhD<br />Co-applicant: Rika Maruyama, PhD<br />Institution: University of Alberta, Canada<br />Award Amount: $35,070<br />This grant is funded in partnership with the FOP Canadian Network.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Project Description: The University of Alberta team will develop a new therapy for FOP using small DNA-like molecules. These molecules can reduce the gene product that induces abnormal bone formation in FOP patients. The team will evaluate the efficacy and safety of these molecules in an FOP mouse model. This research will identify new drug candidates for FOP.</span></div>
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<span style="font-size: small;">Experimental therapy to prevent secondary heterotopic ossification following surgical intervention in FOP</span></h3>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Principal Investigators: Paul B. Yu, MD, PhD and Dong-Dong Xia, MD<br />Institution: Brigham and Women’s Hospital and Harvard Medical School, United States<br />Award Amount: $46,446</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Project Description: In advanced stages of FOP, progressive disease affects nearly all joints, with very limited mobility and high risk for traumatic injury. Surgical excision of heterotopic bone from muscle and soft tissues has been attempted, but almost always leads to rapid recurrence of heterotopic bone and recurrent loss of function. Current options for elective surgery in FOP are extremely limited, due to the lack of effective measures to prevent secondary bone formation following surgical trauma. We hypothesize that dysregulated <em>ACVR1 ALK2</em> activity, in addition to driving primary heterotopic ossification (HO) in FOP, is responsible for the formation of secondary HO following surgical injury. We propose that pharmacologic inhibition of <em>ALK2</em> kinase activity for a limited period following surgical intervention will prevent recurrent bone formation while permitting normal wound healing. We will test the efficacy and tolerability of this approach in an animal model of FOP expressing the <em>ACVR1<sup>R206H</sup></em> mutant allele. It is hoped these experiments will provide a rationale for initiating clinical trials investigating the efficacy of this strategy in patients with advanced FOP.</span></div>
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Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0tag:blogger.com,1999:blog-122611653958203765.post-47818148207596525042015-02-28T09:22:00.000-08:002015-02-28T10:10:23.223-08:00Rare Disease Day 2015<div align="center" class="MsoNormal" style="background-color: white; color: #333333; font-family: Georgia, serif; line-height: 20.799999237060547px; margin-bottom: 0pt; text-align: center;">
<b><span style="color: #222222; font-family: Arial, sans-serif;">rare</span></b><span style="color: #222222; font-family: 'Arial Unicode MS', sans-serif;">/re(ə)r/</span><span style="color: #222222; font-family: Arial, sans-serif;"> </span><span style="font-family: Arial, sans-serif;">Adjective</span><span style="color: #222222; font-family: Arial, sans-serif;"><o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">1.) marked by unusual quality, merit or appeal, distinctive<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">2.) seldom occuring or found uncommonly<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">Typically when we think of something as rare, <o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">we think of something special, <o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">unique or hard to come by.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">Something spectacular such as the Hope Diamond,<span style="font-size: small;"><o:p></o:p></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFOAFB0JmC5HzO-FJgkfISrNMaSS8CRwwkc7McIN8YNStFcD2VL8Ce7cji_Plz2xmBqaCiSwLRU9ggtdZzLQ0zyg_JiWJw7hbkQeIxYd7TVTTMK0HyFFgkS7F67Kq3h8lR6aNzKX0vOX4/s1600/hope+diamond.jpg" imageanchor="1" style="color: #999999; margin-left: 1em; margin-right: 1em; text-decoration: none;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFOAFB0JmC5HzO-FJgkfISrNMaSS8CRwwkc7McIN8YNStFcD2VL8Ce7cji_Plz2xmBqaCiSwLRU9ggtdZzLQ0zyg_JiWJw7hbkQeIxYd7TVTTMK0HyFFgkS7F67Kq3h8lR6aNzKX0vOX4/s1600/hope+diamond.jpg" style="border: 1px solid rgb(204, 204, 204); padding: 4px;" /></a></div>
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<span style="font-size: x-small;"><br /></span>
<span style="font-family: Arial, sans-serif;">or discovering long, lost ancient ruins</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_IngR-vZoZewRERgJJl3T0AZiK4rXnV6Lk-Qii8Svlf9JGvq_k8jgidJU3gsPiyA9kYjmdEbSDIJAif6dmT3iT3sn3Vdwj3nrF4EnNaVvxnXcxWyfP7d8Ccxnxs67lb3DQPGH_FrX03I/s1600/camels+and+pyramids.jpg" imageanchor="1" style="color: #999999; margin-left: 1em; margin-right: 1em; text-decoration: none;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_IngR-vZoZewRERgJJl3T0AZiK4rXnV6Lk-Qii8Svlf9JGvq_k8jgidJU3gsPiyA9kYjmdEbSDIJAif6dmT3iT3sn3Vdwj3nrF4EnNaVvxnXcxWyfP7d8Ccxnxs67lb3DQPGH_FrX03I/s1600/camels+and+pyramids.jpg" style="border: 1px solid rgb(204, 204, 204); padding: 4px;" /></a></div>
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<span style="font-family: Arial, sans-serif;">or even a fossilized sand dollar </span></div>
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<span style="font-family: Arial, sans-serif;">such as the one I found recently on the beach.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0iNym-CuYovAPj8sIKexmbFjmsHo_5nkHEYUFkDt0Zhy7BoZHmHwMDG1PDboT2M-L82LM1hzlJ7zrqKORCdc1gIk1x6VS1t3gt629xKp6Jou-mt4eIk1TAqWzq5CjlePulVfugcP6WVM/s1600/Sand+Dollar+Fossil.JPG" imageanchor="1" style="color: #999999; margin-left: 1em; margin-right: 1em; text-decoration: none;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0iNym-CuYovAPj8sIKexmbFjmsHo_5nkHEYUFkDt0Zhy7BoZHmHwMDG1PDboT2M-L82LM1hzlJ7zrqKORCdc1gIk1x6VS1t3gt629xKp6Jou-mt4eIk1TAqWzq5CjlePulVfugcP6WVM/s320/Sand+Dollar+Fossil.JPG" height="320" style="border: 1px solid rgb(204, 204, 204); padding: 4px;" width="240" /></a></div>
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<span style="font-family: Arial, sans-serif;">Rarely, no pun intended, do we like to associate </span></div>
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<span style="font-family: Arial, sans-serif;">the word "rare" with an illness.</span><span style="font-family: Arial, sans-serif;"> </span></div>
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<span style="font-family: Arial, sans-serif;">However there is nothing spectacular about </span></div>
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<span style="font-family: Arial, sans-serif;">receiving a diagnosis of a rare disease. <o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">It is, in a word, devastating.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">Less than 5% of rare diseases have </span><br />
<span style="font-family: Arial, sans-serif;">any therapies or treatments.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">There are 7,000 identified rare diseases with no cures.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">350 million people have a rare disease. <o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">That is <b>more</b> than all those with </span><br />
<span style="font-family: Arial, sans-serif;">Cancer and AIDS combined.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">Finding funding for research, advocacy </span><br />
<span style="font-family: Arial, sans-serif;">and community outreach <o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">for these orphan diseases, <o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">as they are called, is beyond challenging.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">However within this rare community of people, <o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">there is something special about a rare disease, </span><br />
<span style="font-family: Arial, sans-serif;">the people.</span><br />
<span style="font-family: Arial, sans-serif;"><br /></span></div>
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<span style="font-family: Arial, sans-serif;"><b>These special people are… </b><o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">...the scientists who study it,</span></div>
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigaQR-kEIUCG2WH-V-hRJxX7m1NoUjUKMUw8TxL87x7vpeY7wxVmo3ZhayX3z1M5s5Q214L-33N79DeWNU84r9eVO6vbmOdxy5wE2vL5VLMbrJZyvHUL0MsXyrymInJRpyRm1Pmf0M9Hs/s1600/three+devoted+scientists.jpg" imageanchor="1" style="color: #999999; margin-left: auto; margin-right: auto; text-decoration: none;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigaQR-kEIUCG2WH-V-hRJxX7m1NoUjUKMUw8TxL87x7vpeY7wxVmo3ZhayX3z1M5s5Q214L-33N79DeWNU84r9eVO6vbmOdxy5wE2vL5VLMbrJZyvHUL0MsXyrymInJRpyRm1Pmf0M9Hs/s1600/three+devoted+scientists.jpg" style="border: none; padding: 0px;" /></a></td></tr>
<tr><td class="tr-caption"><span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;"><i>Researchers in the FOP lab at University of Pennsylvania.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;"><i>Meiqi Xu, Drs Frederick Kapkab and Eileen Shore</i></span></td></tr>
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<span style="font-family: Arial, sans-serif;"><br /></span><span style="font-family: Arial, sans-serif;">...the patients and families who live with it</span></div>
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgb-XHRSIAIZI4q6-gAzn0CK5Q20PgPJUYDbsrej9rPmfHWl8l2zwItxfW6J2xSsa-NVRTcYwp7NbMoM-rc31O_7hWEaXjPId2gafvnQeBXqlAoDTYwAvS4PC6mtIu0scGUPJccFHt4ZAQ/s1600/Hayden+FarWest+Skiing.png" imageanchor="1" style="color: #999999; margin-left: auto; margin-right: auto; text-decoration: none;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgb-XHRSIAIZI4q6-gAzn0CK5Q20PgPJUYDbsrej9rPmfHWl8l2zwItxfW6J2xSsa-NVRTcYwp7NbMoM-rc31O_7hWEaXjPId2gafvnQeBXqlAoDTYwAvS4PC6mtIu0scGUPJccFHt4ZAQ/s320/Hayden+FarWest+Skiing.png" height="193" style="border: none; padding: 0px;" width="320" /></a></td></tr>
<tr><td class="tr-caption"><span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;"><i>Hayden Pheif, skiing in 2008, at the Far West</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;"><i>Disabled Sports Center in Alpine Meadows, CA</i></span></td></tr>
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<div style="color: #333333; font-family: Georgia, serif; line-height: 20.799999237060547px; text-align: center;">
<span style="font-family: Arial, sans-serif;">...the amazing people who have only yet learned of FOP and</span><br />
<span style="font-family: Arial, sans-serif;"> will go to </span><span style="font-family: Arial, sans-serif;">"great lengths" to fundraise for research</span></div>
<div style="color: #333333; font-family: Georgia, serif; line-height: 20.799999237060547px; text-align: center;">
<span style="font-family: Arial, sans-serif;">which will help to find a cure</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4K0UEaMWwn1zMMBHMjFREKawu0LXYrVbdZPKgNWBOkOczV-TZ2Ry8GjdmXbC7ELUyyyX3CMqekfGvblsZZC38nvqgO1A8p9Sz_wV24qQDusxBCnVidnMlrUyBe3M7TjSPP7L61TFnbY0/s1600/gwg+finish.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4K0UEaMWwn1zMMBHMjFREKawu0LXYrVbdZPKgNWBOkOczV-TZ2Ry8GjdmXbC7ELUyyyX3CMqekfGvblsZZC38nvqgO1A8p9Sz_wV24qQDusxBCnVidnMlrUyBe3M7TjSPP7L61TFnbY0/s1600/gwg+finish.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;"><i>Team "Girls with Grit" ran the Napa Valley Ragnar<br />(36 hour - 206 Mile) Relay in September to as a fundraiser<br />for Hayden's Hope</i></span>.</td></tr>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;"><br /></span></div>
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<span style="font-family: Arial, sans-serif;">...Jeannie Peeper, the most inspirational woman I know.</span></div>
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<span style="font-family: Arial, sans-serif;">Jeannie, who has FOP, started the International FOP </span></div>
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<span style="font-family: Arial, sans-serif;">Association 25 years ago. Her goal was and</span></div>
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<span style="font-family: Arial, sans-serif;">is to raise awareness, provide outreach to</span></div>
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<span style="font-family: Arial, sans-serif;">families and those effected with FOP as well as</span></div>
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<span style="font-family: Arial, sans-serif;">to provide a 501c to support fundraisers for research. </span><br />
<span style="font-family: Arial, sans-serif;">Today, because of Jeannie,</span></div>
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<span style="font-family: Arial, sans-serif;">Clementia Pharmaceuticals is in Stage Two of</span></div>
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<span style="font-family: Arial, sans-serif;">Drug Trials for a therapy for those with FOP.</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF01G6deBS_eVAa8KIghIzWPHVu6HRegov988K_QRt3ITIoZ3MAAgiWolFHQdzzyMGrWldVR6jsYDEhsclbITNCZMMbZe5ZAdHQex1QM80HkAPwU-Z6bzwTMw5UzHXSTGm4TaA_Qo44hM/s1600/Jeannie_Peeper_and_Dr_Kaplan_25th_Anniversary_2013.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF01G6deBS_eVAa8KIghIzWPHVu6HRegov988K_QRt3ITIoZ3MAAgiWolFHQdzzyMGrWldVR6jsYDEhsclbITNCZMMbZe5ZAdHQex1QM80HkAPwU-Z6bzwTMw5UzHXSTGm4TaA_Qo44hM/s1600/Jeannie_Peeper_and_Dr_Kaplan_25th_Anniversary_2013.jpg" height="230" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;"><i>Jeannie Peeper with Dr. Frederick Kaplan, <br />head of FOP research at U of Penn, at the 25th<br />anniversary IFOPA celebration.</i></span></td></tr>
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<span style="font-family: Arial, sans-serif;"><br /></span>
<span style="font-family: Arial, sans-serif;">These people are rare in a very special way.</span><br />
<span style="font-family: Arial, sans-serif;">They give us hope.</span><br />
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<span style="font-family: Arial, sans-serif;">Even though the people afflicted with rare diseases <o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">create a very large community, <o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">their conditions remain largely unknown <o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">to the vast majority of the world population. <o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">Today, February 28th, <o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">is <o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;"><b>Global Rare Disease Day</b>.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">This day was created in the United States <o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">by the National Organization for Rare Diseases (NORD) <o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">to raise awareness and </span></div>
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<span style="font-family: Arial, sans-serif;">increase advocacy for these special diseases,<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">as well as to provide hope to the </span></div>
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<span style="font-family: Arial, sans-serif;">patients and families afflicted by them.</span></div>
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<span style="color: #0b5394; font-size: small;"><span style="font-family: Arial, sans-serif;"><span style="color: #333333; display: block;">Please join me in by honoring those who</span></span><span style="font-family: Arial, sans-serif;"><span style="color: #333333; display: block;">courageously live with a</span></span></span></h3>
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<span style="color: #0b5394;"><span style="font-family: Arial;"><span style="color: #333333; display: block; font-size: small;">Rare Disease by donating to the</span></span></span></h3>
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<span style="color: #4c1130;"><span style="font-family: Arial;"><a href="http://www.ifopa.org/donate-now.html" style="color: #cc6600; display: block; text-decoration: none;" target="_blank"><span style="color: #333333; display: block;"><span style="font-size: large;">IFOPA</span></span></a></span><span style="font-family: Arial; font-size: x-small; font-weight: normal;"><span style="color: #333333; display: block;"> </span></span></span></h3>
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Megan Olsenhttp://www.blogger.com/profile/14666391805554785891noreply@blogger.com0