01-03-2025
Buckhannon man raises awareness on Rare Disease Day
BUCKHANNON, (WBOY) — Every year since 2008, Rare Disease Day has been held on the last day of February to raise awareness about the research that goes into rare diseases like spinal muscular atrophy (SMA).
SMA is a progressive neuromuscular disorder that affects functions like breathing, swallowing and walking. According to the SMA Foundation, there are 10,000-25,000 children and adults in the U.S. with the disease.
12 News spoke with Bryan Samples, a Buckhannon man who was diagnosed with SMA at 18 months old, and despite the disease creating hurdles in his life, he's been able to graduate, get married and live his life to the fullest.
With all of these accomplishments, Samples has a message of hope for others like him.
'If you want something, go after it, never think that you're less than anybody else. You can lead a normal life and you can do anything anybody else can do, you just might have to do it in a different way,' Bryan 'James' Samples, Advocate for Rare Disease Awareness said.
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Samples said he's looking forward to a world where there is a cure for SMA, thanks to advancements in medication Evrysdi, which he's been taking for a while now and has seen changes.
'As long as things keep on getting better, you know, in the future we might not even know that someone has spinal muscular atrophy and that's pretty amazing,'
To learn more about the medication, you can go here.
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