He's been fighting ALS for 10 years. Now this Bucks County family needs assistance

Jay Smith "speaks with his eyes." They are the only way he can communicate that he is still beating the odds.

He was given a few years to live in 2014 when he was diagnosed with Amyotrophic Lateral Sclerosis (ALS), the disease that baseball player Lou Gehrig brought attention to through his battle.

It's now 10 years later and Smith is still fighting for himself and others afflicted with the devastating illness. He has lost his ability to speak, walk and eat and breathes through a ventilator.

But in the last decade, he has raised over $500,000 for research while his family has shouldered "the staggering out of pocket costs of $200,000 a year" to cover his care and medication costs not covered by insurance, said his father, Gene Smith.

More: One ALS family's heartfelt message to another: You are not alone

On Saturday, a hybrid event will be held 6:30 to 10 p.m. at the Pine Crest Country Club in Lansdale to raise funds to help Jay and his wife, Melissa, and their two teenaged daughters with his care.

People can participate virtually at no cost or in person at $125 for an evening of cocktails, dinner, dancing and entertainment by comedian Tim Conniff and Broadway actor Jenny Lee Stern and musician Jamie Stern. The event is hosted by the Smith and Mekosh families.

Jay and Melissa grew up in Bucks County but moved to Austin, Texas, after college, where Jay opened "Livid Instruments," after inventing a "Viditar" devise that bands use when on tour.

Then the diagnosis came. Despite the news, Jay Smith went to work with his friend, Steve Gleason, a former New Orleans Saints player who also has ALS. Together they invented "Independence drive," a program for steering a wheelchair with your eyes.

"It is available to all disabled at no profit to Jay or Steve," Gene Smith stated.

Barbara Smith, Jay's mother, said she and her husband are doing everything they can to make sure Jay's family has "the funds to pay for his expenses. We are also happy to help other families and also have a foundation to help others with their out-of-pocket expenses. We have been blessed with a very supportive community and thank everyone," she said.

To participate in the event, including bidding on auction items, register or donate at doitforjay.org.  You do not have to be registered to view auction items.  The link to see the auction items is http://bidpal.net/difj24  or you can text difj24 to 243725.

Through Jan. 27, every dollar donated will be matched up to $25,000 through the generosity of Penn Color, headquartered in Doylestown, and its president, Kevin Putman and his wife, Paula.

More: Central Bucks gives, even in the midst of a pandemic

This article originally appeared on Bucks County Courier Times: Inventor with ALS the guest of honor at benefit dinner Saturday night