The 30-minute session can be accessed on the MDA’s Facebook page, and starts at 6 p.m. EST.
People with neuromuscular diseases — including muscular dystrophy, amyotrophic lateral sclerosis (ALS), and spinal muscular atrophy (SMA) — are thought to be among those at highest risk of serious complications from COVID-19. As such, people with these diseases, as well as their caregivers and loved ones, are advised to take extra precautionary steps to ensure their safety.
Unlike existing information for other vulnerable populations — such as the recommendations for the elderly from the Centers for Disease Control and Prevention (CDC) — advice on how people with neuromuscular diseases can stay safe during the outbreak is either lacking or continuously updating.
The online Q&A session aims to address issues related to COVID-19 with a specific focus on the neuromuscular disease community. Topics to be covered include how to be prepared, its impact on the community, long-distance healthcare (telemedicine), and options for care available through the MDA, according to a press release.
The MDA will be soliciting questions to be answered during the session through posts on Facebook.
The session will feature Barry J. Byrne, MD, PhD, an expert in research on, and care of, neuromuscular diseases. A pediatric cardiologist, Byrne serves as chief medical advisor for the MDA, and he is the associate chair of pediatrics and director of the University of Florida Powell Center.
Byrne specializes in conditions that lead to weakness in skeletal muscle and problems with the lungs and heart. He has worked on numerous clinical trials, and has been involved in efforts to create gene therapies for rare disorders such as Duchenne muscular dystrophy and Pompe disease.
The session will also feature Kristin Stephenson, the MDA’s executive vice president, chief advocacy and care services officer. Besides overseeing MDA’s Public Policy & Advocacy Department, Stephenson runs the MDA’s Care & Clinical Services Division, which includes the MDA’s Care Center Network, National Resource Center, as well as a nationwide Care & Clinical Services field team.
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