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 here.
Saturday, June 8, 2019
Monday, May 27, 2019
Hayden's Hope Dipsea Race
Liz Lawler - Carol Tagliaferri - Kelly Bates - Lora Anderson - Megan Olsen
Sunday June 9th, Team Hayden's Hope will be running the Dipsea Race 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.
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. Slowly his muscles are turning to bone, creating a second skeleton, rendering him immobile.
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. This is an amazing accomplishment considering that most genetic conditions never find a therapy. There are no genetic conditions that have a cure.
Please consider donating to the IFOPA in honor of Hayden’s Hope. Click here to donate on line. Or if you wish to send a check, please make the check out to the International FOP Association and send to Hayden’s Hope / IFOPA c/o Megan Olsen 164 Tamalpais Avenue, Mill Valley, CA. 94941.
The International FOP Association is a 501c3 and has received a gold rating for transparency from GuideStar.
Posted by Megan Olsen at 8:58 AM 1 comment:
Monday, February 4, 2019
FOP National Organizations
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.
Posted by Megan Olsen at 9:18 AM 1 comment:
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