Community members will join together for the annual Tour de Foliage ride to support familial dysautonomia research this September 22 at Pace University in Pleasantville.
Rye Brook teen Rebecca Newman is one of only 350 people in the world diagnosed with the neurological disorder, and is inspired by the cyclist tour every year, she told Patch last year. Sixty others with the disorder live in Westchester County and the tri-state area and their friends, family and community will come together at the tenth annual event this fall to support them and the Familial Dysautonomia Foundation. Read the Newman’s full press release below for more information. To read more about Rebecca and her journey in our 2012 article, "Rye Brook Community Supports Teen with Rare Disease," click here.
RARE DISEASE CYCLES THROUGH ODDS
What would you do if your child was one of 350 people in the world with a debilitating illness? Perhaps you’d organize everyone you knew to get on a bike to raise money for treatment and research. That is what a dedicated few have done, with great success, since 2003.
Sixty of the 350 people in the world with familial (FD), a complex and devastating neurological disorder, live in Westchester County and the New York tri-state area. Faced with impossible odds, families have banded together to make the lives of their afflicted children better.
This year’s Tour de Foliage on September 22 marks a decade of cyclists touring the hills of Westchester to help this inspiring group of people. The event benefits the Dysautonomia Foundation, which funds research and treatment of FD.
- FD is a disorder of the sensory and autonomic nervous systems, which control all the reflexes and involuntary functions that keep our bodies working properly.
- FD dangerously compromises digestion, pain and temperature sensation, vision, balance, kidney function, blood pressure control and respiration.
- FD mainly affects people of Ashkenazi Jewish descent. One in 27 Ashkenazi Jews are carriers of the gene that causes FD. But recently, the gene has been found outside of the Jewish population. Testing is available.
Parents of people with FD started the Dysautonomia Foundation over 60 years ago. As a result, incredible gains have been made. Forty years ago, the Foundation established the Dysautonomia Center, the only treatment facility for FD in North America, at NYU Langone Medical Center. 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. Clinical trials are underway on a variety of treatments that hold great promise as potential therapies. 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 conducts each year to raise vitally needed funds to keep the treatment and research going. Some riders are the family members of FD patients. Some are friends. Some are cyclists who appreciate the beauty of the ride and the unmatched spirit of the day. Every dollar raised goes towards helping FD patients. The Tour de Foliage features 15 and 50 mile routes, breakfast and lunch are served, and all riders receive a Tour t-shirt and water bottle. Contact the event organizers at 212-279-1066 or firstname.lastname@example.org. Register to ride at www.fdcycletour.org.