Video: SMA Will Step Center Stage on Rare Disease Day

On February 29, a groundbreaking original musical, Most Likely Not To…, is set to take place for one-night-only to amplify spinal muscular atrophy (SMA), a rare, progressive neuromuscular disease. One in four people in the U.S. lives with a disability, yet, despite growing awareness, ableism is pervasive, and our world remains wildly inaccessible. This musical hopes to highlight the challenges that people living with disabilities face.

"Our media over the years has not always done the best job at accurately portraying stories of disability," explained co-writer Shane Burcaw. "Often disability is portrayed as a tragedy or as the worst possible thing that could happen to a human being... when in reality, the lived experince of disability is varied and diverse and often filled with joy, love, success, and adventure. This story is leaning into that."

Follow our protagonist — a high-powered fashion designer — as she navigates a meet-cute, an awkward high school reunion and a dodgy run-in with the airline industry while traveling cross-country with her wheelchair. With an eclectic ensemble cast, the production will feature show-stopping musical numbers in a comedic twist on disability like you’ve never seen before.

"Anytime you get the privilege on working on a brand new piece that is made with so much love, heart, and intention like this is... it's a rare gift in our business," added director John Tartaglia. "I'm excited for audiences to see this beautiful story."

Most Likely Not To…  is sponsored by Genentech as part of the SMA My Way program, which was built to support and raise awareness for the SMA community.

Most Likely Not To… will be available for streaming after the one-night-only event here. Until then, watch as Shane and John check in with Richard Ridge ahead of the big night!