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ST. PETERSBURG, Fla. — Team Allison Wonderland is working on building team spirit ahead of the annual Cure SMA Walk-N-Roll.
The event at Eckerd College raises money and awareness for spinal muscular atrophy. The progressive neurodegenerative disease affects motor nerve cells in the spinal cord.
Allison Kerns was diagnosed with SMA at 16 months old.
“I have limited functional abilities, so I need, like, 24/7 assistance and care,” Kerns said. “So, that limits independence. But to make up for that, I strive for independence when I can. And so I try to stay active and independent with schooling, with going out and having hobbies.”
The 20-year-old also stays active by advocating for those impacted by SMA. Her mother, Katie, founded the Greater Florida Chapter of Cure SMA in 2009, after struggling to find information about her daughter’s diagnosis.
“It’s come a long way. We needed a presence, and we got it,” said Katie.
And she says there’s still a long way to go. Events like the Walk-N-Roll have helped support three FDA-approved treatments, clinical trials and more.
“One of our best moments in the CURE SMA organization was going to Washington D.C. and advocating to Congress, our senators and our House representatives to get newborn screening for SMA,” Katie said.
As for where future funding should be focused, she said: “Anything focusing on the muscles that can help adults … that’s where I personally am excited and looking forward to and they’re so close.”
“Just research and getting more information, diagnostics on the treatments that we already do have. It’s a lot of brand new technology and we don’t know too, too much about it,” added Allison.
The mother and daughter will continue raising funds and awareness to find out.
“I just — I want to work so hard to make it better and easier,” said Katie.
Making it better and easier for her daughter and others impacted by the disease. Click the link above to register or donate.
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Melissa Eichman
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