Fundraiser to benefit local ALS patient

Jay Smith receives an award in Boston, surrounded by his family._304332

AUSTIN (KXAN) — A family fun night fundraiser Monday will help a local man pay bills as he fights ALS.

Jay Smith was diagnosed with Lou Gehrig’s disease, or ALS, in March 2014. Instead of letting it slow him down, Smith used the diagnoses as a way to raise awareness about the illness that attacks the body’s nerve cells.

With the help of family and friends, Smith raised $200,000 for ALS research and established a charitable organization called Every 90 Minutes.

“Our goal is to support Jay and his wife and his family every day, and enjoy the gifts that he still presents us with,” Jay’s dad Gene Smith said. “He’s still full of joy and humor, and he still makes fun of his dad all the time, so we have fun together.”

Even with the work he’s done to bring attention to the disease, and the positive attitude he’s kept, fighting ALS is still costly.

“Very little of his care giving is covered by his medical insurance,” his mom, Barbara Smith said. “The cost out of pocket for an ALS patient is about $120,000 a year.”

Smith’s parents, originally from the Philadelphia area, moved to Austin to help their son after his diagnosis. But they said they weren’t sure what kind of response they would get when they started asking for help.

“Barbara’s been out knocking on doors, I’ve been out knocking on doors…and I must tell you, the response has just been incredible,” Gene said.

Jay’s mother said they are appreciative of all of the help they’ve received from people in Austin.

“We’ve received tremendous support from our Spicewood community,” she said. “These are people that we’ve never met before and all of a sudden we have thousands of friends in Austin. They’ve been so, so generous.”

The money raised at Monday night’s fundraiser will go to a trust fund that will help Jay and his family pay medical expenses.

About 350 people are already registered to attend the fundraiser, which will be at Balcones Country Club from 6 p.m.-10 p.m. The family fun night will include food, a silent auction, kids games, swimming and live music. Tickets to the event are $10 for kids, $25 for adults or $60 for a family.

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