Muscular Dystrophy Association to Host MDA Frontline COVID-19 Response with Dr. Barry Byrne, a Facebook Live Q&A on Protecting Neuromuscular Disease Community in Midst of COVID-19 Pandemic
NEW YORK, March 31, 2020 /PRNewswire/ --
The Muscular Dystrophy Association invites you to join a special, virtual Q&A conversation – featuring Dr. Barry Byrne and Kristin Stephenson– about the precautions and best practices needed to protect the neuromuscular community in light of COVID-19. Featuring a live Q&A with MDA families, the conversation aims to provide the answers to care questions families urgently need in these uncertain times, and will cover topics related to preparedness, community impact, telemedicine and MDA care.
The neuromuscular disease community – people with ALS, muscular dystrophy, SMA, Duchenne and related rare diseases – are among the highest risk populations for COVID-19. They are also among the most overlooked. While precautions for travelers, older adults and those with conditions that affect respiratory health exist, there is a lack of information specific to people living with neuromuscular diseases, and their caregivers. This conversation and Q&A aims to bring those concerns to light.
Thursday, April 2 at 6-6:30 p.m. ET
MDA will request questions from the community in forthcoming posts on the @MDAorg Facebook page.
** panelists available for interview prior to, or following, Q&A**
- Dr. Barry J. Byrne, M.D., Ph.D: Dr. Byrne is a leading voice in neuromuscular disease research and care. As a pediatric cardiologist, his focus is on conditions that lead to skeletal muscle weakness and abnormalities in heart and respiratory function. Dr. Byrne is the MDA's Chief Medical Advisor. He currently serves as the Associate Chair of Pediatrics and Director of the University of Florida Powell Center.
- Kristin Stephenson, MHA, J.D.: Stephenson is the Executive Vice President, Chief Advocacy & Care Services Officer for Muscular Dystrophy Association. She oversees MDA's Care & Clinical Services Division, which includes MDA's Care Center Network, National Resource Center, and MDA's nationwide Care & Clinical Services field team. She also leads MDA's Public Policy & Advocacy Department.
Since 1950, the Muscular Dystrophy Association (MDA) has been committed to transforming the lives of people affected by muscular dystrophy, ALS and related neuromuscular diseases. We do this through innovations in science and innovations in care. As the largest source of funding for neuromuscular disease research outside of the federal government, MDA has committed more than $1 billion since our inception to accelerate the discovery of therapies and cures. Research we have supported is directly linked to life-changing therapies across multiple neuromuscular diseases. MDA's Neuromuscular ObserVational Research (MOVR) data hub gathers longitudinal clinical data for multiple neuromuscular diseases to improve health outcomes and accelerate therapy development. MDA supports the largest network of multidisciplinary clinics providing best in class care at more than 150 of the nation's top medical institutions, and our national resource center serves the community with one-on-one specialized support and we offer educational conferences, events, and materials for families and healthcare providers. Each year thousands of children and young adults learn vital life skills and gain independence at summer camp and through recreational programs, at no cost to families. For more information visit mda.org.
SOURCE: Muscular Dystrophy Association