Fibrodysplasia Ossificans Progressiva Fund
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Fundraising goal $800.00
Recent donations (4 donations)
Name DescendingX Amount
Schuyler Lukes $75.00
Savvy's Angel $250.00
Cassandra Porter $50.00
Christina Porter and family $100.00
Recent donations
Top donors (4 donations)
Savvy's Angel $250.00
Christina Porter and family This amount includes donations indented below $225.00
   Schuyler Lukes    $75.00
   Cassandra Porter    $50.00
Schuyler Lukes $75.00
Cassandra Porter $50.00
The Porter Family Bike Ride

Would you like to get outside, maintain social distancing and raise funds for new FOP research grants all at the same time? We invite you to participate in the 2020 Penn Medicine Orphan Disease Center Million Dollar Bike Ride-a fully virtual event-being held on Saturday, June 13, 2020. Please consider supporting our family ride by making a donation for new FOP research grants. Or you can participate as a cyclist. You can ride anywhere you feel most comfortable-your driveway or neighborhood, and you can ride in any city, anywhere in the world. No matter where or how you ride, you will still be raising money to fund new FOP research in honor of Savannah Porter. If you'd like to register to ride, please contact Cathryn Roys at cathryn.roys@ifopa.org

SAVANNAH'S STORY
Savannah AKA Savvy, is a bubbly five year old who loves singing, playing with her Peppa Pig Dollhouse and spending time with her older sister, Saniya. On August 28, 2017, our lives were changed forever when suddenly Savannah developed a large, painful mass on her neck that quickly swelled to the size of a baseball. Savannah was taken by an ambulance to Loma Linda Children's Hospital and was quickly admitted without hesitation.

Since August 2017, Savannah has been admitted to Loma Linda Children's Hospital on and off for treatments and several serious health concerns. It was during an admission in May 2018 when Savannah was diagnosed with fibrodysplasia ossifications progressiva, also known as FOP.
What is FOP?
Fibrodysplasia Ossificans Progressiva (FOP) is one of the rarest, most disabling genetic conditions known to medicine. FOP painfully causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no effective treatments for FOP. FOP is a rare genetic disease and there are fewer than 900 people known of worldwide (approximately 285 known cases in the United States) living with FOP.

We hope you can join us in the 2020 Million Dollar Bike Ride in honor of Savannah. Your participation as a cyclist or donor will help us raise much needed funds for new FOP research grants.
Thank you!
With heartfelt thanks, we want to send our deepest appreciation to our family and friends. Your prayers, love, and support have meant more to us than we can put in words. Thank you for all for everything! The Porter Family
Donation messages
Love you! --Savvy's Angel
In Honor of Sassy Savvy, my little warrior and sunshine! We love you and have faith a Cure will be Found! #CUREFOP --Christina Porter and family
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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