OSU alumna showcases talent on Broadway, gives voice to neuromuscular disorder community

OSU alumna showcases talent on Broadway, gives voice to neuromuscular disorder community

Friday, June 21, 2024

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

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

Unlike most who perform on the illustrious stage, this singer was in a wheelchair, but it didn't hinder her from propelling her voice throughout the rafters.

This performance was more than just a chance to showcase Allie Williams' talented voice; it was the realization 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 imposed by this progressive neuromuscular disorder that can cause muscle weakness, difficulty sitting and standing, respiratory difficulties and many other symptoms, her love for music remained strong.

When Williams first went to college in 2000, she didn't pursue her music dream. Instead, she graduated from Rogers State University with an associate degree in graphic arts.

When she returned to campus at 35, she pursued a formal music education at Oklahoma State University, overcame her physical challenges and graduated at 39 in 2020 with a Bachelor of Arts in music.

"I said that I wished there was more representation in the media for people with disabilities," Williams said. "I would have had the confidence to do it when I was younger. So, I wanted to be that person for the younger generation. Representation matters."

Williams' journey had its share of difficulties. Singing, in particular, posed a challenge due to her condition. She had to learn to do everything a student without SMA did while in a wheelchair. However, her positive attitude, unwavering work ethic and support from her voice coach, Professor April Golliver-Mohiuddin, helped her persevere.

"Her final degree recital was one of the most emotional moments of my career," Golliver-Mohiuddin said. "When we started her lessons, we didn't know how much we could improve her vocal technique or breathing capacity through phrases. We were both just blown away by how much she had grown through the time she was studying."

In a significant turn of events in 2020, a new SMA medication called Evrysdi brought hope into Williams' life. This breakthrough significantly improved her health and stamina, enhanced her lung capacity and strengthened her voice.

"With all these treatments out right now, people with SMA are living longer and happier lives," Williams said. "We don't have to sit around waiting to die anymore. So, get up, get out 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 No. 1 genetic killer of children, and since all these medications have come out, that number has fallen so much that people who were ready for their children to die early are watching their children flourish now. Things have changed. It's not so tragic."

Genentech, the company that created the medication, saw Williams posting about her journey with the medicine on social media. It created a website called "SMA My Way," which highlights the experiences of individuals living with SMA. The company started by sponsoring a music video written, produced and sung by people with SMA, then continued by creating a fashion show with only SMA models.

Williams was invited to the third creative endeavor, where she performed in a Broadway musical called "Most Likely Not To…" in the Times Square Center on Feb. 29 about individuals living with SMA. She earned herself a lead role in the musical's album recording, giving her yet another platform to represent the voice of the SMA community.

Williams' experience on Broadway was life-changing for her and those living with SMA, especially young girls who saw her as a role model. Williams said many reached out to her to tell her that her story inspired them to pursue their passion for music.

"The live show was probably the most exciting thing I've ever done," Williams said. "Being on stage and performing was just amazing."

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

As 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 breaks down barriers and empowers 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 up on a stage and working with such talented people for the first time is so worth it."

Story By: Mak Vandruff | [email protected]

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