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news News Monday, August 31, 2020 Monday, August 31, 2020 12:37 PM - Monday, August 31, 2020 12:37 PM

September is National Muscular Dystrophy Awareness Month

Updates from the MDA Care Center at Shriners Healthcare for Children — Florida

September is National Muscular Dystrophy Awareness Month

September is National Muscular Dystrophy Awareness Month, an annual observance that raises awareness for more than 250,000 families across the nation who are living with the neuromuscular disease. In honor of that, Shriners Healthcare for Children — Florida would like to give you an update on what is happening locally at its Muscular Dystrophy Association (MDA) Care Center. This is one of two MDA Care Centers associated with Shriners Healthcare for Children — Florida; the second is part of University of Florida Health in Gainesville.

Here’s what happening at the MDA Care Center located at Shriners Healthcare for Children — Florida

The Muscular Dystrophy Association (MDA) opened its Care Center at Shriners Healthcare for Children — Florida in 2016, which established a clinical partnership between the two organizations to provide children with neuromuscular diseases the care they need. Pictured on the right is a photo from the ribbon-cutting event.

This service line provides biweekly comprehensive clinics offering care from pediatric neurologists, orthopaedic surgeons and pediatric rehabilitation specialists. Patients may also see a nurse or nurse practitioner; physical, occupational and speech therapists; social workers and/or care coordinators during the appointment. On the day of the visit, our highly trained staff is on hand to make adjustments to wheeled mobility devices and orthotists to help with braces. In 2019 alone, 163 patients received care at the Tampa facility’s MDA Care Center, with 28 of them being newly diagnosed cases. Also last year, Shriners Healthcare in Florida participated in a neuromuscular clinical trial that included 55 observational research studies of patients diagnosed with muscular dystrophy and spinal muscular atrophy.

MDA Care Center services have been offered via telehealth to ensure the safety of all patients during the current COVID-19 climate, and feedback from our patients' parents is positive. Now that the spread of the virus is slowing within the state of Florida, and with the recent approval of our grant throughout the calendar year, the clinic will resume mid-September. The Tampa facility also welcomes Brianna Brabander, RN, care manager, who will help oversee the MDA patients, and ensure they receive the multi-disciplinary care that Shriners Healthcare in Florida is known for.

More on the Muscular Dystrophy Association and newly-approved treatments for SMA

The Muscular Dystrophy Association maintains a network of 200 specialized clinics across the United States and in Puerto Rico. Learn more about the MDA and events they have planned in honor of National Muscular Dystrophy Awareness Month.

Per an update from the MDA Monthly Report:

On August 7, the U.S. Food and Drug Administration granted approval of risdiplam (Evrysdi) for the treatment of spinal muscular atrophy (SMA) in pediatric and adult patients. It is the third disease-modifying therapy approved to treat SMA, the leading genetic cause of infant death. Evrysdi is an orally-administered liquid, the first medicine that could be taken at home for individuals with SMA. Read more about this milestone.