About Jay
In 2014, 35 year-old Jay Smith was diagnosed with amyotrophic lateral sclerosis. ALS, a degenerative disease, robs you of your ability to move and eventually breathe. Jay’s only mobility is his eyes and he is on a tracheotomy and ventilator. Jay’s OUT OF POCKET medical expenses are currently $4,000 a week.
In spite of his lack of mobility, Jay continues to invent technology for the entire disabled community, all done with his eyes. In April of 2019 Jay unveiled “Independence Drive” along with his friend and fellow ALS patient Steve Gleason. It is a program for steering your wheelchair with your eyes.
Jay is determined to continue to be a dad to his daughters, Loghan and Peyton and the best husband he can be to his wife, Melissa Mekosh. Jay and Melissa grew up in Central Bucks, PA and attended college in Philadelphia.
Jay was determined from day one to make a difference and live life to it's fullest.
Jay, a prolific writer with a great sense of humor, gives hope to over 40,000 followers on Facebook. He also assisted with the development of a filter attached to ventilators that will filter out the Covid virus, available free to all ALS patients.
When first diagnosed with ALS Jay raised over $300,000 for ALS medical research through his Foundation. Although Jay is not allowed to benefit from this, he has helped many other ALS families with their medical costs.
Jay’s family also established a Medical Trust to help Jay with his medical costs. All proceeds from our fundraisers and your generous donations will go into his Medical Trust so Jay and his family can continue to receive the critical care he needs.
About ALS
ALS is degenerative neurological disease that affects one’s ability to speak, swallow, breathe, and move while the mind stays in tact. To date there is no cure for ALS or effective treatment.
The average life expectancy is 3 to 5 years.
ALS is three times more likely to affect athletes and veterans.
ALS affects children, teenagers, mothers, fathers, men and women of all ages.
Currently there are an estimated 30,000 people in the US, and 260,000 worldwide, living with ALS.
ALS is not incurable, it's underfunded.