Fibrodysplasia Ossificans Progressiva Fund
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Fundraising goal $30,000.00
Recent donations (29 donations)
Name DescendingX Amount
Dann Furia $50.00
Thomas Family
The Marakovic Family $25000.00
The Altberger Family
The Scott Family
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Recent donations
Top donors (29 donations)
The Marakovic Family $25000.00
Sienna Otto This amount includes donations indented below
   Traci and Clayton    $50.00
   The Swope Family    $100.00
   Schuyler & Dennis Chang    $200.00
   Anonymous
   The Kimber Family    $150.00
Megan and Mark
Mario and Anna Chuliver $250.00
Aunt Liz and Uncle Bob $250.00
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Million Dollar Bike Ride In Honor Of Sienna Otto

Help us reach our goal to get a $30,000 match to Fund F.O.P. research!
The Penn Medicine Orphan Disease Center (ODC) is hosting the "Million Dollar Bike Ride", a Philadelphia-based bicycle ride, on Saturday, June 8, 2019 to raise money for research in rare diseases, and is matching donations up to $30,000 per team! Help Team #cureFOP reach our goal!

We are raising funds in honor of Sienna, who will be participating remotely from her hometown of Rye, NY on her adaptive bike. Sienna is 9 years old and was diagnosed with F.O.P. (Fibrodysplasia Ossificans Progressiva) at age 2, after months of unexplained lumps and bumps. F.O.P. is an ultra-rare spontaneous genetic disorder impacting 1 in 2 million people, which causes muscles and soft tissue to turn to bone, progressively restricting movement, leaving patients essentially frozen in place.

Donations raised through Million Dollar Bike Ride supporting the Fibrodysplasia Ossificans Progressiva (FOP) fund will allow the IFOPA to create new FOP research grants. And they will work twice as hard because all donations up to $30,000 will be doubled! Learn about the 2018 grants below:
https://www.ifopa.org/2018_million_dollar_bike_ride_pilot_grant_program
You can give in honor of Sienna!
Today Sienna is a bubbly third grader with lots of friends. She is a star student who loves riding her adaptive bike, and she socialized puppies for Guiding Eyes for the Blind in her spare time!

With the state of the research today, we know Sienna can have whatever future she dreams of. But we have to stop F.O.P. in its tracks. After enjoying several years of good health free from F.O.P. flare-ups, this spring Sienna battled a severe shoulder flare-up, which spread up to her neck and around her left side, resulting in the loss of 65 degrees of shoulder motion. We've heard from adults with F.O.P. that the hardest thing about having F.O.P. is losing independence as you get older rather than gaining it. And now we're witnessing it first hand. Since her flare-up, Sienna now struggles to change shirts alone. She can no longer reach the cabinet in our kitchen, or the shelf in her closet. She can no longer do her own hair. And she can no longer give her parents a full hug.

Sienna isn't fazed by her recent loss of motion and is finding ways to work around her new limitations - she inspires us every day! But this flare-up has emphasized for us the urgency with which we need a treatment. Years, months, weeks and even days matter in the context of a disease that can cause joints to lock up overnight during a flare-up.
Help us reach the finish line!
We are fighting every day and have faith that research will catch up in time. We believe in the IFOPA's vision to fund research for a cure and support families. It would not be surprising if no one was working on FOP, given how rare it is, but today at least 38 academic institutions, 13 pharmaceutical companies and a division of the NIH are all researching or developing treatments for FOP. And there are three clinical trials underway for drugs specific for F.O.P.: Regeneron's REGN 2477, Blueprint Medicine's BLU-782, and Clementia's Paloverotene.

This incredible progress would not be possible without donations from generous friends like you! Thank you for considering helping get us to the finish line!
Donation messages
Go Sienna!! --The Scott Family
Grandpa Charlie and Grandma Wendy have told us how terrific you are. You go girl! --Ms. Barbara and Rob Penney
Sending my love and support to Sienna! --Traci and Clayton
Go Sienna!! --Kate Scavello
fyrdog@optimum.net --Sally Halsey
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delrossi@upenn.edu | Anne Marie Del Rossi, Director, Data Services | 215.898.3062
2929 Walnut Street, Suite 300 Philadelphia, PA 19104 | Superuser