Log in
Fibrodysplasia Ossificans Progressiva Fund
Donate now!
FOP Awareness Video
Fundraising goal $250.00
Brianna Bikes for Team #cureFOP!

Help Raise Funds for Brand New FOP Research Grants
The 2021 Penn Medicine Orphan Disease Center Million Dollar Bike Ride is a fully virtual event being held on Saturday, June 12, 2021. I'm riding around San Antonio for #TeamFOP and need your help! Your participation as a donor will raise much-needed funds for brand new FOP research grants. The Orphan Disease Center will match funds raised up to $30,000. Help me reach my goal of $250!
What is Fibrodysplasia ossificans progressiva (FOP)?
One of the rarest, most disabling genetic conditions known to medicine, FOP 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 other known examples in medicine of one normal organ system turning into another.
Thank You!
Your donation makes a huge difference! I deeply appreciate the love and support from family and friends as I bike around San Antonio for this incredible community.
Demographics and Clinical Characteristics of FOP:
  • Rare, progressive genetic disorder that has an estimated prevalence of 1 per 735,000 to 1 per 2 million births (Baujat et al. Orphanet Journal of Rare Diseases (2017) 12:123)
  • No ethnic, racial, or gender patterns
  • 900 confirmed cases worldwide
  • 285 known cases in the United States
  • Malformation of the great toes is visible at birth
  • Flare-ups that worsen the condition occur spontaneously or following physical trauma such as: childhood immunizations, falls, surgery, biopsy or viral illnesses
  • Rogue bone growth progressively restricts movement
  • Often misdiagnosed as cancer
  • The exact rate of progression is unpredictable, although there appears to be a pattern to the progression (e.g., upper body in childhood and lower body in adolescence)
  • No treatment exists, but seven clinical trials are currently underway
Event details
8th Annual Million Dollar Bike Ride
06/12/2021 11:41 AM
Join me for the 8th Annual, all VIRTUAL, Million Dollar Bike Ride on June 12, 2021! Help us reach our goal to get a $30,000 match to fund FOP research. 
Donate to participate!
Donation messages
Brianna, thank you for your commitment to supporting the FOP community! --Michelle Davis
So happy to support such a worthy cause. May God bless the patients, researchers, doctors and the IFOPA. --Scott and Julie Tanner
Donate!

Share this page with your friends
Post fundraising progress

delrossi@upenn.edu | Anne Marie Del Rossi, Director, Data Services | 215.898.3062
2929 Walnut Street, Suite 300 Philadelphia, PA 19104 | Superuser