Riding For a Cure
By Larry Sacks
On Monday, March 16, in Portland Oregon, a bicycle ride will start. It will be held over four days and will cover the 200 miles to Seattle Washington. But chances are, you won’t hear about it on the news day by day. Chances are, actually that it might not make much of a blip in the news given the on-going coverage on bailouts, steroid usage, rescue plans, executive pay, financial crises, ear-marks, spring-training, pork barrel spending or stimulus plans. And that’s very unfortunate, because the reason behind the ride is to help raise funds to find a cure for Friedreich's Ataxia.
According to WebMD, “Friedreich's Ataxia is a genetic, progressive, neurologic movement disorder that typically becomes apparent before adolescence.” Explained in simpler terms, it is an extremely rare, life-threatening disease that causes progressive damage to the nerves and muscles. Since its diagnosis usually happens as kids start to enter their teens, the disease takes great kids and, for lack of a better term, hurts them. They’re still the same great kids, however, the disease causes them to slur their words, not be able to walk a straight line, causes severe curvature of the spine and severe heart problems that can eventually kill them at a young age.
Five years ago, Santa Clara High School student, Matt Rupel, was diagnosed with Friedreich's Ataxia (FA). To help raise funds to find a cure for FA, Matt, his father Bart, John Towers and Ryan Voreyer, two of Matt’s high school friends, will join others on Ride Ataxia III, to the National Ataxia Foundation (NAF) 52nd Annual Membership Meeting. Matt will join the ride this year on a recumbent tricycle, or trike. Last year, Bart participated in Ride Ataxia II that started in Sacramento and traveled 650 miles over 13 days to Las Vegas for the NAF Annual Membership meeting. Ride Ataxia II was a huge success, raising over $135,000.
According to Bart, “Great advancements have been made recently getting us so much closer to a cure than we were when Matt was diagnosed. The FDA has been reviewing a drug called idebenone that has shown to be partially effective for treating FA. There are some other treatments in the research pipeline that are much more promising, but it takes massive amounts of money to get them to market. The path to drug approval in the United States is long and torturous. It takes millions of dollars to take an idea from the laboratory to the pharmacy. With a rare disease like Friedreich's Ataxia, that is a huge hurdle to overcome. The drug companies have limited interest, because the potential market is so small and the cost is so large. So, we are doing what we can to fund this research ourselves.”
The fund-raising for this event is done online. Donations can be made at www.active.com/donate/rideataxia/Rupeleton. To learn more about the ride and the amazing young man who is afflicted with Friedreich's Ataxia, who started these rides with a ride from San Diego, CA to Memphis, TN visit www.rideataxia.org. To learn more about Friedreich's Ataxia and the efforts to finding a cure please visit curefa.org.
