Bike And Walk Event In Jenkintown To Raise Money In Fight Against Rare Disease
ABINGTON, Pa. (CBS) – A Montgomery County community will come together this weekend to help raise money and awareness for a very rare genetic disease that has touched two families at one local synagogue.
Familial Dysautonomia is primarily a Jewish genetic disease that afflicts about 350 people around the world. Twelve of them are in the Philadelphia area and two at Old York Road Temple-Beth Am in Abington.
FD can affect a person’s ability to chew and swallow, digest food, regulate body temperature and can cause blood pressure spikes.
Rabbi Lawrence Sernovitz, whose two-year-old son has the disease, says research at NYU holds promise.
“Right now, they are doing two clinical trials which will hopefully alleviate the sense of the degeneration of the cells that exist within individuals with FD. If that works, prognosis will be much better, particularly for the younger kids,” Sernovitz said.
They will hold a bike and walk event Sunday morning, April 10th at Alverthorpe Park in Jenkintown to raise vitally needed funds for research and treatment they hope will lead to a cure.
Rabbi Sernovitz says they also want to make couples aware that a simple blood test will reveal whether they are carriers.
For more information on the event click here.
Reported by Brad Segall, KYW Newsradio