A Song for ALS: My Journey to Organizing a Benefit Concert

By Wayne Warnecke

It was August 2020 when I first began to notice subtle changes in my body—slight difficulty with breath control during physical activity, trouble standing upright, intermittent muscle twitches that gradually became more frequent and severe, and balance issues. At first, I brushed these off as just signs of aging.

By July 2022, after undergoing a battery of tests to rule out other potential conditions, I received the diagnosis: ALS.

In August 2022, on my neurologist’s recommendation, I joined my local ALS support group, ALS United Greater New York. It quickly became my lifeline. The group provided essential education and patient support, and from day one, they showed me that life could still go on, even while battling this disease.

I began participating in the group’s Zoom meetings and raising funds during the annual walks. But soon, I felt a stronger pull—I wanted to do more. That desire would lead to one of the most rewarding experiences of my life.

Throughout my 40-year career in the music industry, I’ve had the privilege of working with some of the most talented and generous musicians in the business. One day, one of these musicians suggested, “Why don’t we get some of your clients together to put on a charity show for ALS?” After a few phone calls, it became clear that what had started as a small idea was about to snowball into something much bigger than either of us had imagined. Every person I spoke to asked, “What do you need, and when do you need it?” The response was overwhelming.

Six months of hard work and planning turned that initial idea into a star-studded evening: a cocktail reception and silent auction, followed by a three-hour concert (with such artists as Patty Smyth (Scandal), Paul Shaffer, Rob Thomas (Matchbox Twenty), Average White Band, Lisa Fischer (Grammy Winning R&B Artist), James D-Train Williams, Bob James (Grammy Winning Artist), and ED Palermo Big Band) that brought the house down at SUNY Purchase, New York, on April 15, 2025. We’re thrilled to report that our efforts resulted in a substantial donation for ALS research and support.

The event, “Musicians United for ALS,” was an unforgettable experience, not just for me but for everyone involved. Now that the event is behind me, I’ve come to realize something even more profound—the music community I’ve been a part of for four decades can continue this important effort, raising both awareness and funds for ALS. This cause has become deeply personal to me, and I’m excited to see how it continues to grow and make an impact on others in the ALS community.

If you missed the event but would like to contribute to the cause, you can still support ALS United Greater New York through this link. Together, we celebrated the power of music and community. Together, We End ALS.