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Friday, December 5, 2014

A Hope for FOP & Hayden: FDA Approves Fast-Track Designation for Palovarotene


Clementia Receives Fast-Track Designation from FDA for Palovarotene


MONTREAL, Dec. 1, 2014
The IFOPA is pleased to share news that Clementia Pharmaceuticals received Fast Track Designation for palovarotene for the treatment of FOP.  This designation does not impact the clinical trial that is taking place for our FOP community.  To download and read the entire announcement please click on Clementia Receives Fast-Track Designation from FDA for Palovarotene.
   

Tuesday, December 2, 2014

Giving Back #GivingTuesday

Today is ‪#‎GivingTuesday‬, a global day dedicated to giving back. This year more fundraisers for the IFOPA were held via running events than ever before. Please consider donating to the Girls with Grit Run (http://haydenshope4fopresearch.blogspot.com/…/2014-haydens-…) & the Int'l FOP Association which will support the research efforts to find a cure for FOP. http://www.ifopa.org/donate-now.html.


INTERNATIONAL FOP ASSOCIATION
We just celebrated a day for giving thanks. In the USA we have two days for getting deals to purchase new items. Now, we have ‪#‎GivingTuesday‬, a global day dedicated to giving back. 

Today, December 2, 2014, people around the world will come together for one common purpose: to celebrate generosity and to give.We thank each of our donors, fundraisers, volunteers, members, advocates, doctors and researchers who give to the International FOP Association. Thank you for supporting our mission to fund research to find a cure for FOP while supporting individuals and their families through education, awareness and advocacy.Please click on this link to give today http://www.ifopa.org/donate-now.html and thank you for sharing this post which features some of our supporters who ran this fall to raise FOP Awareness and funds for FOP research.

Monday, September 22, 2014

2014 Hayden's Hope Fundraiser Presents "Girls with Grit"

Click here to donate to the Hayden's Hope Girls with Grit Fundraiser.


    2014  H A Y D E N’ S   H O P E   
            F U N D R A I S E R
                        presents

  girls with grit




On Sept 19 & 20th fourteen amazing women participated in the Ragnar 24 Hour Relay San Francisco to Napa Valley on behalf Hayden's Hope.

Left to right - back row
Donna Cannon (our wonderful pacer who helped us when we weren't running so well), Bryne Powell, Lora Anderson, Deena Pontius, 
Louise Roberts, Monique Lecomte, Caroline Dowd, 
Monika Kaplan, Erin Wendt

Left to right - Front row
Julie Neff, Bonnie Carlson Kaypaghian (our amazing "Fairy Ragnar-Mother" and Van Driver) , Carol Tagliaferri, Liz Lawler (instigator and Team Captain), Megan Olsen, Oscar the dog - Team Mascot


Girls with Grit placed 5th in our Division!!             

Hayden’s Hope raises funds to benefit the International FOP Association (IFOPA) for FOP RESEARCH & AWARENESS.  The IFOPA is a 501c3 non profit organization.

What is FOP?
FOP is one of the rarest genetic conditions known to medicine.  Currently there are 285 confirmed cases in the United States and 800 confirmed cases worldwide. This disabling genetic condition causes bone to form in muscles, tendons, ligaments and other connective tissues, progressively restricting movement and forming a second skeleton that imprisons the body in bone.

Fundraising for FOP
The annual budget of the FOP Research Lab is $1.5 million.  About $500,000 of that amount is provided by the IFOPA and is raised by donations and family fundraisers such as Hayden's Hope.

Facts about Hayden, FOP Research 
& the IFOPA
September 2002 – Hayden is diagnosed with FOP
November 2003 – First Hayden’s Hope Fundraiser for FOP Research is held in Sausalito raising $75K
April 2006 - The ACVR1 gene that causes FOP, discovered at the FOP Lab, is announced in Nature Genetics Magazine
June 2013 – 25th anniversary of the founding of the International FOP Association
June 2014 - Hayden's Hope receives IFOPA Jeannie Peeper Award for Outstanding Community Involvement
July 2014 – Clinical Trail announced for Clementia Pharmaceutical’s Palovarotene.  


You may also donate by mailing a check made payable to "IFOPA".
In the memo write “Hayden’s Hope Girls With Grit”.

Mail Check to: 
IFOPA
101 Sunnytown Road, Suite 208
Casselberry, FL  32707


Sunday, September 7, 2014

Hayden's Hope 2014 Fundraiser Sept 19-20th

Please join us in raising funds for research and awareness for FOP by clicking here.


Join us on September
19 & 20th while a
team of 12 women run
the Ragnar Relay from
San Francisco to Napa
in honor of Hayden's Hope.




For more information on 
Team Girls With Grit
and our mission to raise
research fund and awareness
for FOP click here.


Wednesday, September 3, 2014

Girls with Grit Run for Hayden's Hope

Please join us in raising funds for research and awareness for FOP by clicking here.


Join us on September
19 & 20th while a
team of 12 women run
the Ragnar Relay from
San Francisco to Napa
in honor of Hayden's Hope.




For more information on 
Team Girls With Grit
and our mission to raise
research fund and awareness
for FOP click here.






Tuesday, August 19, 2014

2014 Hayden's Hope Fundraiser Presents "Girls with Grit"

        F U N D R A I S E R
                    presents

  girls with grit
















             Girls With Grit Team            
          Team Leader: Liz Lawler
                   Megan Olsen
                  Monika Kaplan
                 Carol Tagliaferri
                      Julie Neff
                  Caroline Dowd
                     Erin Wendt
                    Bryn Powell
                  Deena Pontious
                   Lora Anderson

Date: September 19-20th
Twelve amazing women will be running the
Ragnar 24 Hour Relay from San Francisco to Napa Valley on behalf Hayden's Hope.

Hayden’s Hope raises funds to benefit the International FOP Association (IFOPA) for FOP RESEARCH & AWARENESS.  The IFOPA is a 501c3 non profit organization.

What is FOP?
FOP is one of the rarest genetic conditions known to medicine.  Currently there are 285 confirmed cases in the United States and 800 confirmed cases worldwide. This disabling genetic condition causes bone to form in muscles, tendons, ligaments and other connective tissues, progressively restricting movement and forming a second skeleton that imprisons the body in bone.

Fundraising for FOP
The annual budget of the FOP Research Lab is $1.5 million.  About $500,000 of that amount is provided by the IFOPA and is raised by donations and family fundraisers such as Hayden's Hope.

Facts about Hayden, FOP Research 
& the IFOPA
September 2002 – Hayden is diagnosed with FOP
November 2003 – First Hayden’s Hope Fundraiser for FOP Research is held in Sausalito raising $75K
April 2006 - The ACVR1 gene that causes FOP, discovered at the FOP Lab, is announced in Nature Genetics Magazine
June 2013 – 25th anniversary of the founding of the International FOP Association
June 2014 - Hayden's Hope receives IFOPA Jeannie Peeper Award for Outstanding Community Involvement
July 2014 – Clinical Trail announced for Clementia Pharmaceutical’s Palovarotene.  


You may also donate by mailing a check made payable to "IFOPA".
In the memo write “Hayden’s Hope Girls With Grit”.

Mail Check to: 
IFOPA
101 Sunnytown Road, Suite 208
Casselberry, FL  32707


Sunday, July 27, 2014

Clementia Pharmaceuticals received U.S. Orphan Drug Designation for Palovarotene for the treatment of FOP.

The news just keeps getting better!  

"The IFOPA is pleased to share news, that Clementia Pharmaceuticals received U.S. Orphan Drug Designation for palovarotene for the treatment of FOP. This designation does not impact the clinical trial that is taking place for our FOP community. Please visit the IFOPA’s Drug Development page to download and read the entire announcement and other information about the palovarotene clinical trial by clicking on this link http://www.ifopa.org/drug-development.html. "