RYE BROOK, N.Y. Rye Brook residents Lisa Newman and her husband, Jeff, are co-chairing a cycling event this month to ensure research funding for familial dysautonomia , a genetic disease so rare only 350 people worldwide are living with it. The Newmans daughter Rebecca is one of those people.
Rebecca works really hard to keep up with her friends and do what she can to lead a very, very typical life compared to many people with the same medical condition, says Lisa Newman.
FD is a disorder of the sensory and autonomic nervous systems and is found in those whose descend from Ashkanazi Jews. Chewing and swallowing, digestion, pain and temperature sensation, vision, balance, kidney function, blood pressure control, and respiration are all dangerously compromised with FD.
One of my closest FD friends cant eat at all by mouth. My other friends cant drink at all by mouth, said Rebecca, who is now a sophomore at Blind Brook High School. When she was young, Rebecca could not swallow anything. The biggest advancement in her health came at the age of 1, when she had a feeding tube put in, to protect her lungs by having liquids move through the tube. Puberty brought a different issue scoliosis and Rebecca went from having a bat mitzvah to getting a nine-hour operation.
When a family has a child with an incredibly rare disease they have to get creative about fundraising. The Tour de Foliage is a cycling event that was born in 2004 to fund the Dysautonomia Foundation , which works with the Dysautonomia Center at New York University's Langone Medical Center, dedicated to treating and researching the disorder, for which there is no cure.
Rebeccas life wouldnt be the way it was without the work of the foundation. We appreciate everyones support and we cant take it for granted. If we dont do this, no one else will, said Lisa Newman.
This years Tour de Foliage will take place Sept. 23 around Pace University. The Newmans daughter Julia, who is a senior at Blind Brook High School, already has more than $1,200 in donations. Ive targeted Facebook a lot and Im getting the word out with fliers and brochures, Julia said.
The event features 15- and 50-mile routes. Breakfast and lunch are served, and every rider will receive a tour T-shirt and water bottle. Riders are also automatically entered into a raffle for gift baskets and gift certificates.
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