Community Spotlight: Brynne Willis
At 10 years old, Brynne Willis knew something was wrong; it was time for the Presidential Fitness Test required by public schools and she kept falling behind her peers.
“I kept falling every time I tried to run and was the last to complete the one-mile run,” said Brynne.
Worried about the cause of her weakness, she asked her parents for guidance. After seeing a pediatrician, sports medicine specialist and finally a neurologist, Brynne was diagnosed with SMA Type III in March 2003.
In the beginning, Brynne wasn’t empowered by her diagnosis.
“I desperately tried to hide this disease, embarrassed of what visible impairment brought,” Brynne mentioned.
However, after the loss of her cousin, Joshua McKee, to SMA Type I, Brynne’s mindset changed and she made it her mission to support those with the disease and do good in her community. Her first step was attending the 2016 Annual SMA Conference hosted by Cure SMA.
Today, Brynne is a Clinical Coordinator at Johns Hopkins University and a member of the Nominating and Governance Committee of the Cure SMA Board of Directors. She is a true leader in the SMA community. Being involved in the SMA diagnosis process while also living with the disease and receiving treatment, gives Brynne a unique perspective. Her understanding of the disease and the impact it had on her family is a motivating factor in advocating for the SMA community.
“Cure SMA makes it so easy to advocate for our community. It’s clear their goal is to advocate for all types and ages affected by SMA. This gives me the confidence to explore ways I can advocate,” Brynne said.
As a researcher, Brynne is also looking forward to the cutting-edge advancements of the SMA Drug Pipeline.
“We are living in the age of SMA research. We are experiencing history in the making, and that’s what makes me most excited,” Brynne shared.
In the next five years, Brynne hopes that newborn screening will give everyone diagnosed with SMA the opportunity to receive life-changing therapies.
While SMA may have slowed down Brynne’s jogging, she hasn’t let it slow down her life – and she is encouraging everyone to get involved.
“Don’t wait until you feel ‘ready’, because if you do, you will miss out on the incredible opportunities and knowledge this community has to offer,” she advised.
Now is the perfect time to become an active member of the SMA community. By sharing our stories and empowering our community, leaders like Brynne and leaders like you can help transform tomorrow for all people affected by SMA!
Interested in telling your story? Email us at firstname.lastname@example.org to learn more.