Strolling the boardwalk for a cure

Emma’s 5K Walk For a Cure on the Long Beach boardwalk on Oct. 24 brought family, friends and students from Lawrence High School, Valley Stream South, Hewlett High School, Long Beach High School, Rambam Mesivta and several other Suffolk County High Schools together to raise awareness about Tay-Sachs disease.

Hewlett High School senior and key club member, Alex Weinrauch, said Christine Hallahan, the sole organizer of the walk, came to talk to the club about the walk. Weinrauch appreciated that she came to speak to them and ask them for their help.

“It was a great day and she (Hallahan) was really appreciative of our efforts,” he said. “I felt unified with everyone that was there since we all wanted to raise money and awareness for the disease.”

Hallahan, the aunt of 6-year old Emma who was born with Tay-Sachs disease, a genetic neurological disorder, said she got lucky that it was such a beautiful day. “It was a day full of love,” Hallahan said about the day of the walk. “Emma was able to lead the walk which was really powerful.”

Nearly $10,000 was raised and Hallahan and is still receiving checks almost daily for the National Tay-Sachs & Allied Diseases Association. A majority of the money will be dedicated for research and the remainders will go to families, based on her choice.

Marion Yanovsky, the co-president of the New York Chapter of the National Tay-Sachs & Allied Diseases Association, helped Hallahan get organized for the walk and thinks she did a great job. “She (Hallahan) was very motivated because of her niece and she wants to further research,” Yanovsky said. “There is some exciting research happening right now.”

Yanovsky stressed the importance of detection by undergoing a carrier screening, which detects Tay-Sachs and other neurological disorders. She highly suggests that couples looking to have children be tested.

If a woman tests positive as a carrier, they can still get pregnant but doctors will carefully monitor their pregnancy. “Because of carrier screening, the number of Tay-Sachs infected children has been reduced by 99 percent because carriers have been found,” Yanovsky said.

Joann Rabinowitz, Hallahan’s mother said she knew her daughter would not have an easy time planning the walk but thought it was a wonderful gesture and was pleased that it turned out to be so successful. “Christine’s first attempt was outstanding,” she said. “If she’s able to do it another year, I’m hoping it will build even further.”

Hallahan said she would like to continue to raise awareness and find a cure by planning a “bigger and better” walk next year. “Emma’s disease doesn’t just effect her but it effects her two siblings because it’s difficult for them to have a normal life,” she said. “And for a mother and father to have to look at their child everyday, not knowing if she’ll be around the next day is heart wrenching.”

Weinrauch said the walk was very organized for being the first one and thought Hallahan was really passionate about the cause. “Since it benefited her niece directly, it made the experience more real,” he said.

She said most kids with Tay-Sachs die between 1 and 4 years of age, so it is truly a miracle that her niece is still alive at 6-years old. “At this point, Emma is blind and deaf so basically her body is shutting down,” Hallahan said. “But she is a beautiful little girl and my ray of sunshine.”