Cure SMA Walk-n-Roll: Why It Matters To Maylan

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Back in 2021, I introduced you all (through a two-part series of photographs) to Maylan, a truly remarkable young lady living with Spinal Muscular Atrophy (SMA) who I met over 10 years ago at a truly remarkable camp hosted by Nicklaus Children’s Hospital for ventilator-assisted children and their families, VACC Camp.

Maylan at home, 2021

What is SMA? It’s a genetic disease affecting the central nervous system, peripheral nervous system, and voluntary muscle movement (skeletal muscle). SMA affects approximately 1 in 11,000 births in the U.S., and about 1 in every 50 Americans is a genetic carrier. And although SMA is thought of as uncommon, it’s the second most common severe hereditary disease of infancy and childhood after cystic fibrosis.

Individuals with SMA have difficulty performing the basic functions of life, like breathing and swallowing. However, SMA does not affect a person’s ability to think, learn, and build relationships with others. Maylan is a perfect example of that – being a long-time advocate for awareness of this condition, even representing the South Florida Chapter (where she’s a Chapter Board Leader) at “Cure SMA Hill Day”, an annual event where advocates with SMA and their families visit Capitol Hill in Washington, D.C. to meet with congressional offices.

Moreover, she also co-hosts a podcast (“Access Granted”) on Instagram and has unflinchingly shared the realities of living with SMA, especially her treatment journey with SPINRAZA®, a prescription medicine used to treat SMA in pediatric and adult patients. This treatment has delivered some very positive results for Maylan and many others with SMA.

And yeah, I’m a pretty big fan of hers.

Maylan at Cure SMA Walk-n-Roll 2025

So when I saw that she was participating in the Cure SMA Walk-n-Roll here at Vista View Park in Davie, Florida, I figured I’d join her team and take part in the walk – bringing my camera along as well.

I’m gonna let Maylan take it from here – in her own words…
“This event helps raise funds for SMA research and support programs — the same efforts that helped bring three FDA-approved treatments (with more on the way!) into the world. I’m living proof they matter. Because of events like these, treatments exist that have helped improve my stamina, strength, and even my breathing.

One of the most incredible things about today’s SMA treatments is how powerful they can be when given early. For babies diagnosed and treated right away, some are able to hit milestones that used to feel completely out of reach — crawling, walking, running, and in some cases even growing up asymptomatic. It’s one of the clearest reminders of just how far research has come and why events like the Walk-n-Roll matter so much.

There’s something incredibly heartwarming about seeing families, friends, and supporters all rolling and walking together. The energy is fun, hopeful, and full of love. And behind all that love is some serious impact — every dollar raised fuels new research and future treatments.

Beyond the medical side, Cure SMA has given me a whole community I feel connected to — people who understand, support, and show up for one another. The Walk-n-Roll is like a big reunion of that energy. It’s powerful, it’s hopeful, and it’s full of the kind of connection that keeps all of us going.

Treatment for SMA isn’t a one-size-fits-all situation, and everyone’s results are unique. But the reason we even have options is because of years of community-driven fundraising. The Walk-n-Roll makes that possible in the sweetest way — people coming together to create real change.

Everyone’s SMA journey looks different, but events like this make progress possible for all of us.”