OSU graduate showcases her talent on Broadway and gives the neuromuscular disorder community a voice

Friday, 21 June 2024

Media Contact: Jordan Bishop | Editor, Brand Management Department | 405-744-7193 | [email protected]

On a brightly lit Broadway stage, a vibrant singer performs a powerful melody.

Unlike most of the others who appear on the illustrious stage, this singer was in a wheelchair, but that didn’t stop her from catapulting her voice through the rafters.

This performance was more than just an opportunity to showcase Allie Williams’ talented voice; it was the fulfillment of a lifelong dream and a symbol of hope for a community battling a debilitating disease.

Williams was diagnosed with spinal muscular atrophy type 2 at a young age. Despite the limitations of this progressive neuromuscular disease, which can cause muscle weakness, difficulty sitting and standing, difficulty breathing, and many other symptoms, her love of music remained undiminished.

When Williams first entered college in 2000, she did not pursue her music dream. Instead, she graduated from Rogers State University with an associate degree in graphic design.

When she returned to campus at age 35, she pursued formal music training at Oklahoma State University, overcoming her physical challenges and graduating with a Bachelor of Arts in Music in 2020 at age 39.

“I said I wish there was more representation for people with disabilities in the media,” Williams said. “I would have had the confidence to do that when I was younger. So I wanted to be that person for the younger generation. Representation is important.”

Williams’ journey has been fraught with difficulties. Singing in particular has been a challenge due to her condition. She has had to learn to do everything a student without SMA does while in a wheelchair. However, her positive attitude, unwavering work ethic and the support of her singing teacher, Professor April Golliver-Mohiuddin, have helped her persevere.

“Her graduation concert was one of the most emotional moments of my career,” said Golliver-Mohiuddin. “When we started teaching her, we didn’t know how much we could improve her vocal technique or breathing capacity through phrases. We were both just overwhelmed by how much she had developed during her time as a student.”

In 2020, a new SMA drug called Evrysdi brought hope to Williams’ life. This breakthrough significantly improved her health and endurance, increased her lung capacity, and strengthened her voice.

“Thanks to all these treatment options, people with SMA are living longer and happier lives,” Williams said. “We don’t have to sit around and wait to die anymore. So get up, get out there and do what you want to do. Live your life instead of just waiting for it to end. That’s the most important thing. SMA is the leading genetic cause of death in children, and since all these drugs came along, that number has dropped so much that people who were prepared for their children to die early can now watch their children flourish. Things have changed. It’s not as tragic.”

Genentech, the company that developed the drug, saw Williams posting about her experience with the drug on social media and created a website called “SMA My Way” that showcases the experiences of people with SMA. The company began by sponsoring a music video written, produced and sung by people with SMA and then hosted a fashion show featuring only SMA models.

Williams was invited to the third creative project, performing in a Broadway musical about people with SMA called “Most Likely Not To…” at the Times Square Center on February 29. She landed a lead role in the recording of the musical’s album, giving her another platform to represent the voice of the SMA community.

Williams’ experience on Broadway changed her life and the lives of people with SMA, especially young girls who saw her as a role model. Williams said many have reached out to her and told her her story inspired them to pursue their passion for music.

“The live show was probably the most exciting thing I’ve ever done,” said Williams. “Being on stage and performing was just incredible.”

Williams’ journey is a testament to the transformative power of medical advances. She continues to advocate for the SMA community, sharing her experiences on social media platforms and teaching music lessons online.

Even though the curtain closes on this chapter of Williams’ story, her journey is far from over. With every note she sings and every dream she pursues, she continues to break down barriers and empower others to believe in the extraordinary.

“It’s hard,” Williams said. “It’s going to be hard. You’re going to cry a lot, but it’s worth it. The thrill of being on stage for the first time and working with such talented people is so worth it.”

Story by: Mak Vandruff | [email protected]