Raising awareness for orphan diseases in Washington DC

June 12, 2009 Couple to bicycle 325 miles in support of rare-disease funding By JOE WILLIAMS Standard Editor Dave and Heather Nagy of Harrison Township will ride their bicycles to Washington, D.C., this month to support federal funding for research into rare diseases. The Nagys will join 12 other team members who are participating in the Vasculitis Foundation’s Power Pedal Ride for Rare Diseases. Heather suffers from Addison’s Disease, an endocrine system disorder in which her adrenal gland does not produce sufficient hormones. Her condition requires her to take supplements several times a day. Heather is retired, but she works part time as a tutor for Central Ohio Technical College. She also represents the National Adrenal Diseases Foundation on the Coalition of Patient Advocacy Groups. Dave is also retired and also works part time at COTC, where he teaches computer classes. He is an avid cyclist, while Heather admits she is not. “For the rather inexperienced cyclists, we are going to take turns driving the ‘sag wagon,’” she said. From June 24-29, the Nagys and their teammates plan to pedal 325 miles along bike trails from Pittsburgh to the nation’s capital. Along the way, they plan to spend five nights in motels and hostels in separate cities. In D.C., they will deliver to Congress a letter signed by hundreds of people touched by rare diseases, in support of federal funding for research. While fewer than 200,000 people suffer from so-called rare diseases in the U.S., according to the Vasculitis Foundation, more than 25 million Americans are somehow affected by the more than 6,000 rare disorders. The VF Power Pedal Team is seeking sponsorships to support education and awareness of rare diseases. They also ask people to tell their own stories about how they are touched by those rare diseases. The team will pass along those stories to Congress. “If they could write their personal stories, I think they could have a lot of impact on federal funding for this area,” Heather said. Additional Facts • To donate money for the VF Power Pedal Ride for Rare Diseases or to share personal experiences about rare diseases with the U.S. Congress, visit www.vasculitisfoundation.org/vfpowerpedal • To track the team on its trip, visit http://vfpowerpedal.blogspot.com/