Rare Disease Fights the Odds Thanks to Westchester Cyclists

Contact: David Brenner

What do you do when your child has a life threatening illness yet no one has heard of it? When big bio-tech companies turn away as there is no profit to be made in helping your child? You get creative. Each fall for the past six years, a small yet highly motivated group of cyclists have toured the hills of Westchester to help a small yet highly motivating group of people afflicted with a rare genetic disorder. The event is the Tour de Foliage and it benefits the Dysautonomia Foundation, which funds research and treatment of familial dysautonomia, an exceedingly rare Jewish genetic disease that afflicts approximately 350 people worldwide. This year’s Tour de Foliage on September 12th will be the seventh time cyclists take to the scenic roads around Pace University in Pleasantville to make a real difference in the lives of the FD population.

FD is a disorder of the sensory and autonomic nervous systems, which control all the mechanical, automatic functions that keep our bodies functioning properly. Chewing and swallowing, digestion, pain and temperature sensation, balance, kidney functioning, blood pressure control and respiration are all dangerously compromised in FD.

Because the population is so small, FD families are challenged to fund treatment and research. The Dysautonomia Foundation was founded over 60 years ago just for that purpose. As a result, incredible gains have been made. Forty years ago, the Dysautonomia Center at NYU Langone Medical Center was established. Today it is comprised of a state of the art research lab, two endowed professorships and a medical team dedicated to treating and researching this rare disorder. A sister Center at Hadassah Hospital in Israel opened in 1980. Today, clinical trials are underway on a new compound that holds great promise as a potential therapy; through the Foundation’s efforts, this compound was identified, manufactured, and tested. Now, instead of dying in childhood, many patients with FD live well into their adult years.

The Tour de Foliage is one of a series of annual events the Foundation sponsors each year to raise vitally needed funds to keep the treatments and research going. Some riders are the mothers, fathers, aunts, uncles and siblings of FD patients. Some are friends. Some are cyclists who appreciate the beauty of the ride and the unmatched spirit of the day. Everyone there makes a difference and every dollar raised goes towards helping FD patients live longer and better lives. The Tour de Foliage features 25 and 50 mile routes. Breakfast and lunch are served and all riders receive a Tour t-shirt and water bottle.

The 7th Annual FD Cycle Tour de Foliage is Sunday, Sept 12, 2010 (Rain or Shine) at Pace University in Pleasantville, NY and starts at 8am. There are 25 and 50 mile routes. Routes and more information can be found at www.fdcycletour.org.

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