New City Man Runs Organization To Treat Rare Genetic Disease

David Brenner is the executive director of the Dysautonomia Foundation, which is holding its seventh bike ride Sept. 12.

New City's Michael Brenner, 23, is just one of 350 people in the world with familial dysautonomia, a genetic disease that affects the sensory and autonomic nervous systems found mostly in Jewish people, especially those from Eastern Europe.

His father, David Brenner, is the executive director of the Dysautonomia Foundation, a non-profit organization based in New York that supports medical treatment for the disease, as well as research and public awareness.

On Sept. 12, the Dysautonomia Foundation will hold its seventh annual Tour de Foliage, a bike ride at Pace University's Pleasantville campus to raise funds for familial dysautonomia. There is a 25 mile ride, in which riders must raise at least $75 in sponsorships to participate, and a 50 mile ride, in which riders must raise at least $100 in sponsorships.

"I'd say typically, most people raise more than they have to just to get in the race," Brenner said. "It's a beautiful ride through a very scenic portion of Westchester. We have a lot of cycling enthusiasts, people who have said it's one the nicer rides they go on."

Riders who raise more than $500 will be entered into a raffle to win a new bike, and those who raise at least $1,000 will receive an official Tour de Foliage jersey. There will also be breakfast before the ride and lunch served from noon until 3 p.m. at Pace. Riders also must pay $35 to register for the race.

The ride also takes sponsors for the event as a whole at different increments. People looking to sponsor the ride can do so through the Dysautonomia Foundation's website.

Brenner said they are also looking for volunteers to help with registration and staffing the event, as well as making sure the riders are following the proper route. The ride check in is at 8 a.m., and the 50 mile ride starts at 8:30 while the 25 mile ride starts at 9.

The bike ride is just one of the things the Dysautonomia Foundation does to raise money for familial dysautonomia. Brenner said the foundation also holds golf outings, dinners and receivers lots of smaller donations from people.

The Dysautonomia Foundation also established the world's only two treatment centers for the disease, one in Manhattan at New York University opened in 1970 and on in Jerusalem Hadassah Hospital-Mt. Scopus opened in 1980.

"We funded the research to discover the carrier gene," Brenner said. "Now there's the carrier test to find out if someone has the gene."

While the disease still doesn't have a cure, Brenner said progress has still been made as the previous average age someone lived with the disease was five, but that is now a much higher number.

"It's transforming from something that was once considered a fatal disease to a more manageable one," Brenner said.

He also noted that there are varying degrees of the disease, and it can be slightly different for all people who have it. He said it affects involuntary functions, or "all the things we take for granted." He also said there is a decreased ability to cry or feel pain.

"The most important thing people can do is get screened," Brenner said, adding that a simple blood test can get screened for the gene. "It's also highly suggested for women considering getting pregnant."

Anybody looking for more information about the diesease or organization can visit www.familialdysautonomia.org.


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