The Muscular Dystrophy Association (MDA) will host its first Muscle Walk in Gainesville after recent developments in university research.
Muscle Walk is a 3K walking event organized by MDA to raise money for children and adults with the neuromuscular disease. According to MDA, over $8 million was raised nationally in 2017. The money raised at local walks, such as in Jacksonville, are used to fund research centers.
Lauren Wilkinson, event organizer and family support and clinical care senior coordinator at MDA Jacksonville, said Gainesville houses two of the world’s prominent MDA research centers. The centers are the Gainesville Multidisciplinary Muscular Dystrophy Association practice and the UF Powell Gene Therapy Center.
Recent research done by the centers have contributed to the FDA approval of several drugs. These include Spinraza, Emplaza, and Eteplirsen.
The most recent discovery, she said, was Eteplirsen in 2016. Eteplirsen is prescribed to treat a specific strand of Duchenne muscular dystrophy.
One of the drug’s primary trials was conducted by the University of Florida.
Dr. Barry Byrne, professor and associate chair of Pediatrics, Molecular Genetics and Microbiology at the University of Florida and Director of the UF Powell Center, said Eteplirsen would treat roughly 13 percent of young boys affected by Duchenne.
National attention for university discoveries has prompted patient mobility. Neuromuscular patients and their families pour into Gainesville from various states, including Georgia and South Carolina.
The medical care they receive outside of clinical trials are paid for by MDA, Wilkinson said.
“We have a lot of mobility, and a lot of interested families,” she said. “The demand for a walk in Gainesville was long overdue.”
Dana Chlebowski, a Jacksonville native, took interest in the local area after MDA shifted its yearly medical services to Gainesville in 2016. The previous facility was stationed in Jacksonville at Wolfson Children’s Hospital.
Her child can see multiple doctors in one day for free, she said.
Clinical services are funded by local MDA events. Money raised by Muscle Walk will funnel directly into the muscular dystrophy services in Gainesville, Wilkinson said. The fundraising goal is set for $20,000. As of March 12, participants raised $11,000.
Muscle Walk will take place on May 19 at 10:30 a.m at Depot Park, 200 SE Depot Ave.