We are in the business of connecting rare disease patients to therapy. We are also always seeking ways to be involved in the rare disease community that go beyond our business goals. This past weekend offered one such opportunity at one of the biggest local rare disease events of the year: the 3rd Annual Million Dollar Bike Ride sponsored by the Penn Medicine Orphan Disease Center (ODC).
Despite being a relatively young event, the Million Dollar Bike Ride has annually brought over 600 participants from more than 20 U.S. states and has raised over $2 million for rare disease research in two years. Perhaps even more incredibly, it is reported that 100% of the funds raised have gone directly to rare disease pilot grant programs, without any overhead withheld.
Even though I can’t claim to be an avid cyclist, I headed down to University City on a Saturday morning to experience the event and lend some moral support to some of our friends who were riding. While the riders challenged themselves to complete rides of 12, 33, or even 73 miles, I figured just being awake and at the race at 6 a.m. on a Saturday would be challenge enough for a nocturnal person like myself.
With a 24-ounce coffee in hand, I made it to the Penn ice rink as the cyclists were gathering. The event said rain or shine, and the organizers definitely weren’t kidding. The weather was miserable enough for standing outside drinking coffee, let alone riding a bike from West Philly up the hill through Mt. Airy back along the Schuylkill to the finish (mercifully the Manayunk Wall was absent from the route, because that would have been downright sadistic in any weather). However, for people who spend every day of their lives fighting rare disease, a little rain on a bike ride is nothing to overcome. So many riders, including patients, patients’ families, and advocates, still turned out to ride for more rare diseases than I could count.
The more I interact with the rare disease community at events like the Million Dollar Bike Ride the more amazed I am at the energy the community pours into fighting rare disease. Congratulations to all the riders and volunteers on another successful event. I look forward to coming back next year…as a participant!
Program Manager, Vencore