The Tyler’s Tribe Foundation was founded by Meghan Decker after her brother, Tyler, was diagnosed with ALS at just 26 years old. What began as a personal mission to support Tyler has grown into a nonprofit dedicated to raising awareness and funding for ALS patients and their families, helping cover the enormous costs of living with the disease. Through events, partnerships, and initiatives like the Tyler’s Tribe Foundation Endowment for ALS Research at UC Irvine, the organization is also fueling critical research to one day find a cure. The endowment was created last year thanks to a $100,000 gift from Tyler’s Tribe.
This fall, Tyler’s Tribe invites supporters to swing into action at the Adapt x Tyler’s Tribe Golf Tournament on Monday, October 13, 2025, at Shadowridge Golf Club. Whether you’re a seasoned pro or a first-time putter, the day promises fun, camaraderie, and a chance to support ALS patients—plus a prize for the best Old Florida golf attire! Click here or email contact@tylerstribe.com to get involved.
In the following Q&A, Meghan shares the journey of starting Tyler’s Tribe, supporting patients, and partnering with researchers, offering a deeply personal look at the impact of ALS and the hope for breakthroughs on the horizon.
Q: How did Tyler’s Tribe get started?
A: I started Tyler’s Tribe with my brother Michael. At first, it was just about supporting Tyler—we held golf tournaments and events to help cover his medical expenses. But as people began reaching out with their own stories of losing loved ones to ALS or struggling to afford care, I felt called to expand.
What began as a family effort quickly grew, and within a year we became a nonprofit. Since then, we’ve helped more than 50 ALS patients and are currently supporting over 25. ALS is often called an “old man’s disease,” but that’s no longer true—many of our patients are women under 40. The disease doesn’t discriminate, and it’s affecting younger people every day.
Even though the fight is hard, I believe breakthroughs are coming. I can feel it in my bones—big changes are on the horizon for ALS research.
Q: What was the process like for you and your family learning about Tyler’s diagnosis?
A: Tyler was only 26 when he was diagnosed in July 2020, right in the middle of COVID. At first, it just seemed like little things—muscle twitches, trouble keeping up when we worked out. But the turning point came when he went surfing and told my mom, “I couldn’t get up.” That was when we knew something was seriously wrong.
It was tough to get answers, but a general practitioner quickly referred us to a neurologist. By mid-July, we had the official ALS diagnosis. We went to five more neurologists hoping someone would say it was something else, but they all confirmed it. Hearing “ALS” for a 26-year-old was devastating—it felt unreal until every doctor told us the same thing.
Tyler is an introvert, so the spotlight hasn’t been easy for him. But he’s in awe of how big the movement has grown and deeply grateful for the support. Honestly, we all are—it feels like the community has wrapped our family in a hug for the past five years, and it still amazes us.
Q: How long after the diagnosis did you create Tyler’s Tribe?
A: We announced the foundation to the world on August 25th, 2020 and have been going non-stop ever since.
Q: In 2024 you started an endowment with UC Irvine to support ALS research. How does it work?
A: The endowment provides funding for UCI researchers studying ALS—especially bold or unconventional ideas that are often hard to get funded. It started with $100,000, but the goal is to spark discoveries that can attract much larger investments if they show promise.
Q: How did the connection with UC Irvine start?
A: It was completely Marissa Norys’ (Senior Director of Engagement Programs) idea—she brought it to our board, and we loved it. Partnering with UCI is mutually beneficial: they’re supporting the community, and it helps us gain more visibility locally while continuing to serve patients nationwide.
Q: How can someone support Tyler’s Tribe?
A: Join us at our annual golf tournament on October 13th—it’s a fun day with great food, live music, and a party atmosphere, all while raising money for ALS patients. Even if you can’t donate, you can still help by spreading the word. Awareness matters—you never know who’s been touched by ALS until you start the conversation.
Q: What has the experience been like with the 25 patients you mentioned?
A: At first growth was slow, but soon word of mouth from the ALS community brought in five new patient requests a week. We now partner with other ALS organizations to stretch support as far as possible—sometimes even paying patients’ electric bills, since losing power can mean losing access to oxygen.
Most people don’t realize insurance barely covers ALS expenses—95% comes out of pocket. Even something as essential as a wheelchair can cost $250,000, yet insurance might only cover $30,000. While our ultimate goal is to help find a cure, right now we’re focused on directly funding patients’ needs.
Q: How is Tyler doing these days?
A: Tyler is what’s called a slow progressor—he’s been fighting ALS for nearly seven years and can still walk with help, which is rare. But aside from that, he now relies on others for everything, even something as simple as scratching an itch. His mind is fully intact while his body continues to be taken from him, which is the harsh reality of ALS.
Q: How has Tyler felt about Tyler’s Tribe?
A: Tyler is an introvert, so the spotlight hasn’t been easy for him. But he’s in awe of how big the movement has grown and deeply grateful for the support. Honestly, we all are—it feels like the community has wrapped our family in a hug for the past five years, and it still amazes us.
Q: Beyond a cure, what do you hope research will find?
A: A true diagnostic test. Right now, ALS is diagnosed by ruling out everything else, which forces patients through painful and invasive procedures. If researchers could create one clear, painless test, patients wouldn’t have to endure years of uncertainty—some even wait five years for a diagnosis. That alone would be life changing.