Even though Rebecca Newman is one of only 350 people in the world diagnosed with on Sept. 23 she and her family will feel much less alone. More than 100 community members will be spending the day supporting Rebecca and benefiting an organization that funds research for her rare disease.
Friends, family and acquaintances will participate in the 9th Annual, an annual bike ride to raise funds and awareness for FD research that is growing in ridership every year.
Familial dysautonomia, sometimes called FD or Riley-Day syndrome, affects normal bodily functions such as chewing, swallowing, blood pressure control, digestion and respiration. Only 640 people have ever been diagnosed with it, and about one-third of them live in the New York area, while another third live in Israel. As recently as 40 or 50 years ago, the mortality rate was high and the life expectancy of patients was limited, with most familial dysautonomia sufferers only living until age 5.
Newman was diagnosed when she was just one year old. Since then, her family has been working to help raise awareness and donations for FD research and treatment. Tour de Foliage benefits the Dysautonomia Foundation, a New York-based organization founded in 1951, not too long after FD was first identified in the United States.
Every year ridership grows, said Rebecca’s mom Lisa Newman, who is also a board member of the Dysautonomia Foundation. The first year the bike tour raised about $50,000 and in recent years that number has more than tripled, Newman said.
“Its really easy to feel very alone but we have so much support from the wider community,” Lisa said. “So many people look forward to doing this every year and they love to participate. It has become a multi-generational thing.”
The Newmans are hoping to include more teenage riders this year, the second year that teens ages 16 and 17 can ride with adults 18 or older. Rebecca’s sister Julia, a senior at Rye Brook High School, will ride with her father Jeff in Tour de Foliage for the second time this year. Jeff has been regularly riding with a small group of people, the "Rye Brook Riders," for several years. He started riding to prepare for the Tour and has now become an avid bicyclist.
Rebecca, while struggling living with FD, is still in other aspects- she loves Nick Jonas, is great with technology, plays a mean game of gin rummy, and is an avid tweeter. Rebecca has worked as a CIT at summer art camp at the Mid-Westcheser JCC in Scarsdale and hopes to become a counselor there.
While she lives her normal teenage life, living with FD is a daily challenge and the support of the community means a lot to her.
“I am really happy they are doing this for familial dysautonomia,” Rebecca said of the bike tour. “Because FD is such a rare medical issue that no one has really heard of it, to raise awareness for it and get donations, I am really touched by it since it helps with research.”
Local businesses, friends and acquaintances involved themselves by donating not just money, but time and effort to make Tour de Foliage happen ever year, the Newmans said.
“We could not do this without wide circle of support,” Lisa said. “They do it year after year and they are so loyal and there for us.”
Lisa pointed out that The Westchester Triathlon is the same day and that experiential fundraisers-events that involve walks, bike tours, triathlons, etc.- are becoming more popular, which gives their fundraiser more competition.
“It is a small event compared to something like an MS walk, but it is very, very personal and different for participants because they know they are making a difference,” Lisa said.
Thefeatures 15 and 50 mile routes through Pace University in Pleasantville. 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.
To read more about Familial Dysautonomia, click here.
To read more about Rebecca's case, check out Satta Sarmah's 2010 article