John Lay is a 3rd generation Austinite and a 4th generation Texan with a long history of being active in his community. He served on the Austin ISD school board for eight years and furthered his love for the river by serving on the Colorado River Alliance board for twenty years. Recently, John was bestowed the honor of having their annual River Hero award named after him. Family is everything to John and his wife Jill. Their tight knit family of five children and eight grandchildren must agree, as they all live within three miles of one another. John is outgoing, has never been afraid of a microphone or podium, and his children often joke that they are jealous of their parents’ fun social life and incredible friendships. John often says, “Surround yourself with people that make you smile.”
In early 2018, John started to have weakness in his arm. He consulted multiple doctors and went through many tests in search of an explanation. After no diagnosis had been made, he started to suspect that something serious was going on but didn’t want to worry his children. After a muscle biopsy later that year, a motor neuron disease was indicated. In early 2019, he was referred to Dr. Stanley Appel at the Houston Methodist ALS Clinic, and was diagnosed with ALS. The prognosis for survival with ALS patients is two to five years.
John and his wife Jill sat down with their family and shared the diagnosis without shedding a tear.
“I’m 70 years old, I’ve lived a long great life. Don’t be sad for me. The good news is we know this now and we have time together,” he told his children.
As soon as he was diagnosed, John and his family got to work researching everything they could about the disease and found the ALS Association of Texas. John and Jill joined the monthly support group and his children started their Walk to Defeat ALS team.
At first, John was hesitant to tell his story. He saw people in the support group and at the ALS clinic who were younger, with small children, and in later stages of the disease. When diagnosed, John was in his seventies, at the beginning stages, had watched his children grow to adulthood and have children of their own. He felt fortunate compared to many other patients.
Then John had a thought: “How do we raise awareness for this, not just for me, but for everyone with ALS?” As his children worked on their Walk team, they learned more about ALS advocacy and the work of the ALS Association of Texas. They talked to their dad about the impact of telling his story. John realized that “If my story can help other people and raise awareness, let’s go big for the Walk. I’m ready.”
The Lay family started recruiting friends and family to join Team John Lay for the Walk to Defeat ALS. “Everyone who has ever met our dad just loves him… They would do anything for him,” says his children. More than 150 people walked, 340 donated, and they raised $55,000!
They continued their Walk celebration at an after-party at a friend’s restaurant where John gave a speech.
“This has been the best year of my life,” John said. “The support that my family, friends, and children’s friends have given me has been incredible. This is a journey and I’m on the journey, but as I always tell people, everybody’s got something. Each person has situations with their own family, you just deal with those things, you support one another and keep smiling. I wake up every morning and I’m happy to be here and I try to make the best of each day.“
John was accepted into Dr. Stanley Appel’s groundbreaking Treg trial in March, just when COVID-19 hit Texas and everything shut down. But John was determined. “If I can be part of the science to move the ball forward to slow the progression or find a cure, to be able to contribute that, then I don’t feel like I’m sitting down not doing anything,” he said. Right now, John doesn’t believe he will see a cure in his lifetime. But Dr. Appel’s trial has been shown to slow the progression of the disease, and that could make all the difference for a person living with ALS. John isn’t participating in the clinical trial for himself. He’s doing it to help others in the future. And he believes that if someone is going to find a cure, it’s likely to be Dr. Appel and his team.
Since his diagnosis, John has lost the use of his arms. But he has still made it a priority to live life to its fullest. After his diagnosis in 2019, he took a kayak trip down the Colorado River, went to Wrigley Field, and visited the casinos in Lake Charles. Today, he’s spending as much time as possible with his family and friends, which has been challenging during the pandemic.
This year, the Walk to Defeat ALS is going to be much different due to the pandemic. Instead of bringing teams together for one large event, as we have done in years past, teams are encouraged to host their own Walk to Defeat ALS at Home, in the way that works best for them. On October 31, instead of bringing together a team of 150, the Lay family will gather and walk around their neighborhood, at a social distance, walking in unity with the ALS community across Texas.
Fundraising during a pandemic is a challenge, “This is a disease where you can’t sit on the sidelines for a year or two because of the impact of COVID. ALS can’t wait. It’s going to be harder to get federal funding during the pandemic, so it’s going to be things like the Ice Bucket Challenge, the Walk, and individual donations that moves the needle closer to slowing the progression of ALS,” his children say.
John is grateful for his circumstances, which can be a surprising thing to hear from someone who has been diagnosed with ALS. He has chosen to approach this in a positive way, cherishing each day he spends with his loved ones, sharing his story, participating in the clinical trial to move research forward and raising funds so that one day we can live in a world without ALS.
Want to get involved and support Texans with ALS like John?