What is the power of the humble bicycle?
Sure, it can help you get in shape or provide a competitive outlet. But for Dr. Jim Wilson, a rare disease researcher at the University of Pennsylvania, the bicycle unleashed much, much more.
A decade ago, he formed a mountain bike and cyclocross team that set a goal to raise awareness about the genetic lung disease cystic fibrosis (CF). Wilson and Monique Molloy, Executive Director of the Orphan Disease Center at the University of Pennsylvania, soon pivoted beyond CF to start a new team with a broader mission: to raise awareness and funds for rare diseases, which affect an estimated 300 million people worldwide.
It was the beginning of what would become Philadelphia’s Million Dollar Bike Ride, which has raised $17 million for rare disease research.
“The CF Foundation no longer really needed our help on their events, so we decided to pivot to Rare Disease Cycling and broadened the remit, not just CF. That was at a time too, when we were going to do our own cycling benefit and we were going to do it better than anyone,” said Wilson, who is the Director of Penn’s Orphan Disease Center and Gene Therapy Program.
Today, Team Rare Disease Cycling is a mountain bike racing team sponsored by Philadelphia area bike shop Keswick Cycle with a mission beyond just competing and reaching the podium. They wear bright green kits featuring strands of DNA and seize opportunities to strike up conversations about the team’s mission and the Million Dollar Bike Ride.
“It’s the one thing that truly binds us as a team, and you can’t fully understand it until you experience it,” said Scott Figiel, the team’s volunteer co-captain. Figiel and his counterpart, Ryan Swartz, rally support for and plan out the ride.
The Million Dollar Bike Ride brings over 750 fundraising-cyclists and volunteers to the University of Pennsylvania’s campus to ride 10, 32 or 70 miles around University City, Philadelphia. Teams can enter to represent individual diseases and receive matching funds for research into those conditions. The full amount raised goes to support the research grants.
The teams get to decide what science the Million Dollar Bike Ride puts into the request for applications, Molloy said. That helps to create an opportunity for researchers to answer patient advocacy organizations’ calls, she said.
Best of all, kids who have rare conditions can be active participants. Some ride along, some are passengers and others cheer from the sidelines. During the event, cyclists are constantly reminded why they’re there, Figiel said.
“For instance, every year there's a child and his family that are at one specific rest stop, and he makes postcards by hand. I still have several hanging in my garage just as a memory, but that's his way of saying thank you,” Figiel said.
Kids who take part are directly participating in an event that’s funding research that could lead to new treatments – and they also get the joy of the ride. For Wilson, the ride proves the power of the bicycle.
“What hasn't left me, is that these diseases take away a lot of their childhood and their parents don't have control because the disease has the control,” Wilson said. “So, I thought well, maybe the bicycle could be a respite for these kids. Maybe the bicycle could bring them happiness.”
