I remember when I first moved to the East Coast and Team CF (Cystic Fibrosis) formed in Philadelphia. They were a small group of mostly local riders who had a lot of heart, some notable results and now a big vision: Take it all up a notch and create a larger regional, and maybe national, presence to raise awareness for the cause. It impressed me how quickly they became a dominant force. Go to any regional endurance or National Ultra Endurance Series race, and you were guaranteed to see a lot of blue and white argyle, often leading the charge.
Team founder and major funder Dr. Jim Wilson, who has been the leading researcher on cystic fibrosis in the world for over 20 years, is not only an avid mountain biker himself, but also saw firsthand how vigorous exercise like mountain biking was as effective as therapy for kids and adults with the inherited, chronic lung disease (and let’s face it, it’s way more fun). He wanted to use cycling as a platform to promote fitness for those with CF, to increase awareness of CF, and to raise money for CF research.
In short order the elite mountain bike team (the team also includes cyclocross racers), led by Christian Tanguy, Cheryl Sornson, Gerry Pflug, and Selene Yeager cleaned up at nearly every endurance race in the Mid-Atlantic region, not even Trek legend Jeff Schalk could stop Tanguy in the NUE series that first and second year. Along the way, besides the elite squad, he nurtured a growing band of amateur cyclists on the club team, many who had Cystic Fibrosis themselves and used the sport to retain a better quality of life.
As the team broadened, its riders began successfully hitting select stage and marathon races on the west coast as well as foreign lands such as Africa, Brazil and Costa Rica with success not only in results, but also in spreading the message of Dr. Wilson.
Heading into this year there’s an important name change and a new look—Team Rare Disease Cycling. This represents Dr. Wilson’s ongoing research well beyond just CF but to all rare diseases. The elite team has also added notable racers, including up and coming pro Cole Oberman, to leave an even bigger footprint, both in its race results and message. The team, along with The Penn Center for Orphan Disease Research and Therapy, will also be hosting a “Million Dollar Bike Ride” this May in Philadelphia to raise money for rare disease research.
If what I’ve seen so far is any indication, Rare Disease Cycling will be a force to be reckoned with—and definitely fun to watch—this season.
Team CF Broadens Its Reach as Rare Disease Cycling
Team CF is rolling into its fifth year with an expanded mission, a larger squad, and a new name: Rare Disease Cycling, all aimed at raising awareness and ultimately research funds to fight the spectrum of rare genetic diseases well beyond cystic fibrosis, including muscular dystrophy, sickle cell anemia, hemophilia and more.
“This new direction allows our cyclists to have an even greater impact on the lives of those suffering from rare diseases,” says team director Jim Wilson, who is also a Professor at the University of Pennsylvania. “We will do so through advocacy and a very aggressive program to raise money for rare disease research.”
To date the members of Team Rare Disease Cycling have been a dominant force on the East Coast, particularly on the ultra-endurance scene. Their success continued in 2013 as the team dominated the National Ultra-endurance Series (NUE) winning the series championship in the women’s (Cheryl Sornson) and single speed (Gerry Pflug) categories and placing 1st (Christian Tanguy), 2nd (Cary Smith) and 3rd (Rob Spreng) in men’s overall. The team also made a splash in the mountain bike epic stage racing scene with Selene Yeager and her teammate, Specialized MTB Factory Team racer Rebecca Rusch dominating in the Open Women’s category of Brasil Ride and Sornson and Pflug securing 3rd place podium positions in their respective divisions of the La Ruta de Los Conquistadores.
For 2014, the Elite Team will remain the same and will also include pro mountain bike and elite cyclocross racer, Cole Oberman. The team is also retaining past sponsors Specialized, DNA Cycling, CarboRocket, and ProBikes.
“I’m so excited to be a part of the gathering momentum for the research of rare diseases and to be able to raise funds and awareness for this purpose by doing something I am passionate about: riding and racing my bike,” says returning racer Stephanie Swan of Pittsburgh, Pennsylvania.
To facilitate its broader mission, the new team will partner with the University of Pennsylvania’s Center for Orphan Disease Research and Therapy to help raise vitally needed funds for rare disease research. Genetic diseases such as muscular dystrophy primarily affect children, often with tragic consequences.
“While science has made advances in biomedical research that provide the tools to develop therapies for these diseases, the programs to do so aren’t well funded by the biopharmaceutical industry because there are too few people affected to yield a large financial return,” says Wilson. “Rare Disease Cycling aims to bring much needed attention—and funds—to these programs to find treatments and cures.”
On May 3rd 2014, Rare Disease Cycling and the Orphan Disease Center at Penn is holding a benefit ride in Philadelphia to raise money for rare disease research in what is being called The Million Dollar Bike Ride and 100% of monies raised will go straight to rare disease research.
Those interested in racing for Rare Disease Cycling on one of their regional grass roots teams should check out membership at www.rarediseasecycling.org. Cyclist registration to participate in The Million Dollar Bike Ride is open at http://www.pennmedicine.org/milliondollarbikeride. Rare disease foundations that would like to raise money for their cause in the event should contact Jim Wilson at firstname.lastname@example.org.
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