LIVE: Working on Walking’s Silva Brings Awareness to Spinal Muscular Atrophy

Wednesday, July 19, 2017

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Alyssa Smith

Alyssa Silva was diagnosed with a rare neuromuscular disease, Spinal Muscular Atrophy (SMA), when she was just a few months old.

Through her nonprofit organization, Working On Walking (WOW), Silva continuously works to raise funds and bring awareness to the disease.

In December of 2016, the Food and Drug Administration approved the first drug to treat SMA and Silva says, “it’s already showing incredibly promising results for those who have access to it.”

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Silva says the drug, sold under the brand name Spinraza, is a huge medical breakthrough in the SMA community and she has been fortunate enough to be one of the first adults to receive treatment. 

“It’s something I’ve been dreaming of since the day they told us there was nothing we could do,” Silva’s mother, Dori, says.

Dori says many families look to Silva and WOW as a source of inspiration and guidance. She says Silva gives hope to families of children who are newly diagnosed with SMA. 

WOW Fundraiser 

In celebration of life and the milestone of a treatment for Spinal Muscular Atrophy, Silva says the 8th annual Working on Walking Fundraiser for SMA is going to be a celebration full of food, picturesque views and dancing in Providence. 

“We want to celebrate the hope that has become a reality. We want to celebrate this milestone we've reached and still recognize the work we have to do in terms of fundraising as this drug isn't accessible to everyone. We refuse to quit until SMA has been eradicated,” Silva says. 

The Working on Walking Fundraiser for SMA is August 26 at Skyline at Waterplace in Providence. 
 

 

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