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 firstname.lastname@example.org
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.