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Jay Smith, ALS warrior

In 2014 Jay Smith, Central Bucks High School West graduate and graduate of the University of the Arts, was diagnosed with ALS at the age of 36.

Jay is married with two young daughters and currently living in Austin, Texas. Jay’s dad was CEO of the Central Bucks YMCA for over 20 years and his mom is a retired CB teacher and real estate broker.

His wife’s (Melissa Mekosh) family owned the Warrington Skating Rink for many years.

Jay jokingly calls himself “Half Man, Half Machine.” You see, Jay has no mobility, speech, is on a feeding tube, a breathing machine, a suction machine, and communicates with his eyes.

Jay has adapted his lifestyle and controls his surroundings totally with his eyes, steering his wheelchair, turning on lights, opening blinds, music, and adjusting his bed.

“When Jay was losing the mobility in his hands, he could no longer work the remote to adjust his bed, so he and I spent a solid day creating a program on his computer to adjust his bed with his eyes, I laying on the floor under his bed pushing buttons,” says his mom. “I asked Jay how he did it and his response was ‘I just programed it myself. It was easy.’”

Jay has taken his diagnosis as an opportunity to help others and is currently working with Quantum, his wheelchair company, creating new and affordable eye technology not only for himself but for all disabled patients.

If the technology does not exist, Jay simply invents it. Since Jay’s diagnosis in 2014, he immediately took action, opening a nonprofit foundation to raise money for research. Jay is a prolific writer and has over 37,000 followers on Facebook due to his poignant, yet humorous posts.

Jay has been true to his word not only in his inventions but has also contributed over $200,000 to ALS research. He has befriended many other ALS patients such as Pete Frates (creator of the Ice Bucket Challenge), Steve Gleason (NFL New Orleans Saints player), Matt Bellina (former Navy pilot), Beth Hebron (paralegal) and Sarah Cognaliese (writer).

They communicate on a daily basis discussing the latest advances in treatments for ALS, the newest technology for ALS patients, and how they can help others.

In spite of the daily challenges, Jay spends a good part of the day working on new inventions. He wants to make life more bearable for all disabled. Jay’s ability to invent goes way back to his early childhood.

He attended Bucks Community College where his creativity was embraced by the faculty and then transferred to the University of the Arts where he invented his first musical instrument, the Vidatar, a controller used by U2 and Beck, which controls light and visuals on stage for musicians.

In 2010 Jay and his wife and daughters moved to Austin, where he opened his company, Livid Instruments.

In 2014 Jay invented the Guitar Wing for which he won “Inventor of the Year” from Popular Science Magazine. The same year Jay was diagnosed with ALS.

He has since closed down his tech company and his wife, Melissa has returned to work full time.

Jay has a caregiver during the day when Melissa is at work. Melissa takes care of Jay at night tending to his needs and then getting up the next day and going to work.

“She’s our true hero,” says her family. “Functioning on very little sleep, she keeps a positive attitude.”

As Jay’s disease progresses, he will need a caregiver 24 hours a day. None of his caregiving is covered by medical insurance and will be well over $100,000 this year out of pocket.

As a result of his escalating expenses, the Smith family has opened a medical trust for Jay and his family.

The Smith and Mekosh families are hosting an event on January 20th, 2018, “Crazy for Jay #endALS” at the Delaware Valley University Life Sciences Building and Theater, where the very talented Jenny Lee Stern will headline a “Patsy Cline” show.

All proceeds will be put toward Jay’s medical care. There will food, drinks, signature cocktails and a silent and live auction. Items that have been donated to date are vacation homes, getaways, auto detail packages, jewelry, spa packages, sporting venues and more.

“We cannot thank our Doylestown community enough for their love, concern, and support,” says Gene Smith, Jay’s dad. “ALS is a horrific disease and it is very comforting knowing that we are surrounded by such a wonderful community. Raising money for our son’s medical needs is a very humbling experience.”

To obtain tickets contact either Barb Smith (215-601-2529 or besmith8000@gmail.com) or Patti Mekosh (215-264-7370 or pmekosh@gmail.com), or register online at www.every90minutes.org/crazy-for-jay/.

PHOTO CAP: Jay Smith, his wife Melissa, and their two daughters.