For the last four years the FD/MAS community has been REALLY excited about a particular bike ride in Philadelphia. It’s not that we’re super cyclists, it’s just that this event happens to be the biggest driver of private FD/MAS research funding in the world. Through the Million Dollar Bike Ride, Team Captain Cindi Brandt Levin and the community of amazing fundraisers who setup fundraising pages have led the FD/MAS community to raise $300,000 for FD/MAS research. Thanks to these grants, there have already been some really promising breakthroughs, but our continued participation in the Million Dollar Bike Ride isn’t guaranteed.
The Million Dollar Bike Ride is organized by UPenn School of Medicine’s Orphan Disease Center and they invite many rare disease communities to participate. UPenn matches the money each disease team raises up to $50,000. That’s like a free $50,000 towards a treatment or a cure for any community that’s organized enough to rally and raise the funds. The event has become really popular, so popular that they have now decided to limit the number of diseases that compete. So how will they choose which rare disease communities get to join the ride and access up to $50,000 in free research dollars?
Community participation is key!
Only the top 20 teams from this year’s race will get a spot in the 2019 Million Dollar Bike Ride. Team FD will be ranked against other racing teams by the number of dollars we raise, and the number of cyclists who ride in the race.
Last year, Team FD had more people involved in our efforts than ever before. Seven families set up crowdfunding pages, 12 cyclists actually rode on the day of the ride, and over 200 people donated. All these people helped Team FD raise $107,228 for FD/MAS research! To keep funding grants through the Million Dollar Bike Ride in 2019 and beyond, we’ll need even more community members to get involved as riders, fundraisers and donors.
Deanna Portero, executive director of the Fibrous Dysplasia Foundation was one of the cyclists in the 2017 race. “Everyone at the race had a positive experience. I’m not an athlete at all, so I chose the short and flat 13-mile route. It was inspiring to ride through Philadelphia on a nice spring day while fueling FD/MAS research.” This year, Deanna will be asking a few friends who live in Philadelphia to join her in the race. “After the race there is usually a great buffet and selection of local beers for riders sponsored by UPenn, which is a great time too.”
FD/MAS parent and FDF Board Member Jocelyn Pederson also joined Team FD for the first time last year. “We were surprised at how easy it was,” said Jocelyn,“ Our friends and neighbors just want to help and the Million Dollar Bike Ride gave them the tools to do that. It was incredible, the outpouring of support we felt.” Jocelyn couldn’t come to Philadelphia to bike, but by creating a fundraising page she took an even more crucial step in supporting Team FD, and FD/MAS research.
“Many people find success fundraising for the Million Dollar Bike Ride, because every single cent of every single donation goes directly to research grants. Plus, University of Pennsylvania truly does match the donations from FD/MAS patients, family and friends. Donors can make double the difference that they normally world” explained Deanna.
Join our Team!
At this very moment, Team FD research grants are powering ground breaking research in Rome and Boston. Last year, Dr. Mara Riminucci shared with us that her mouse model studies showed a complete stop in FD bone growth, and now she’s working on perfecting the medication dosage for the mouse so she can eventually move to human trials. This progress could not happen without the brave people who joined Team FD!
“Every time a patient or family member makes a donation, even a small one, they are becoming a part of this push for a cure,” explains Cindi Brandt Levin, “We need as many people joining this cause as possible.” Starting a campaign is easy; you can set your fundraising goal and choose whether or not you want to go to the actual Bike Ride. Have questions or need help getting started? Just ask us!