May 20th marked the third consecutive year that Team FD participated in the Million Dollar Bike Ride to raise funds for FD/MAS research. Team Captain Cindi Brandt Levin calls this our most successful year yet. Team FD had a total of 7 peer-to-peer fundraising campaigns and 12 riders in the 2017 event. Previous years have seen only 4 campaigns.The actual bike ride in Philadelphia is a lot of fun, but several campaigns were powered by FD/MAS community members who did not attend in person and who live quite far away.
“This was my first year making a campaign,” said Jocelyn Pederson, whose son Rylan is an FD/MAS patient and the guitarist behind Rylan’s Rhythms. “Before this year, I didn’t realize we could have our own campaign, or that it was so easy to get involved.” Rylan and Jocelyn live in Spruce Grove in Alberta, Canada and did not attend the bike ride. Still, their neighbors and friends could see the challenges Rylan faces. They wanted to help. “It was overwhelming to see our community come together with love and concern for our Rylan,” said Jocelyn, “They just want to help and the Million Dollar Bike Ride gave them the tools to do that.”
FDF board member and patient parent, Kiran Murty participated by raising funds in a campaign, as well as completing the 34 mile route of the ride. “There is a great need for continuity and follow through.” Said Murty, “Continuity in funding, follow through in research. When there are no outside cheerleaders we, the patient and family community, become the cheerleaders.”
When combined the seven campaigns who joined Team FD engaged 200 donors. The FD/MAS community owes a huge thank you to all of those who donated, and an extra special thanks to those who fundraised: Cindi Brandt Levin and the Levin family, Lauren Ruotolo, Jocelyn and Rylan Pederson, FD Warriors, Inc. founders Lauren Foster and Skye Steppe, Megan Keeling, Kiran Murty, and Giorgio Savenije. Their leadership, combined with UPenn’s match, and the FDF Triple Match, raised over $100,000 for FD/MAS research grants this year. The final number will be tallied later this summer.
“I was blown away this year by the support we had from the community,” said Team Captain Cindi. “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. At this point we’ve raised about $300,000 for FD/MAS specific research. We’ve done that together. And now researchers all over the world in the rare disease space are taking notice. Last year we had eight really great research proposals and we could only fund one. We want more researchers interested in our goals and we want to find every novel treatment idea out there. Other diseases have benefited and even been cured by research. It takes a village, but we want that treatment for FD.”
Cindi plans to serve as Team Captain for the FD/MAS team until research finds a cure. “I’ve already been impressed with the progress we’ve made in just three years,” said Cindi. “I joined the Million Dollar Bike Ride because I felt discouraged by the lack of knowledge about FD/MAS. Now we have two different researchers making advances towards a cure.” Cindi is excited to share some of these advances and discuss this year’s grant at the upcoming Patient and Family Conference. Her hope is to get even more people engaged in the fight for a cure. “If every patient or support group member gave a small donation, or if even a fraction of all our Facebook followers gave, we’d be able to fund many grants for many researchers,” said Cindi. “I’m hoping this year’s grant brings in innovative research proposals from the top scientists around the world and I’m hoping next year we double the number of campaigns and people involved in Team FD.”
For her part, Jocelyn has already decided that she will participate in next years campaign. “As a parent, it is our responsibility to fight for a better tomorrow for all afflicted with this horrible disease. Instead of sitting back and watching FD/MAS get worse, we are front and center battling it,” said Jocelyn, “Rylan is worth it.” At the FDF we believe all FD/MAS patients are worth it. Here’s to another successful year and another step forward in the fight against FD/MAS.