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MDA Frontline COVID-19 Response: Facebook Live Q&A to Protect the ALS Community with Dr. Matthew B. Harms
NEW YORK, April 20, 2020 /PRNewswire/ --
What:
The Muscular Dystrophy Association (MDA) invites you to join a special virtual conversation on Facebook Live featuring Dr. Matthew B. Harms and Kristin Stephenson, about the precautions and best practices needed to protect the ALS (amyotrophic lateral sclerosis or Lou Gehrig's disease) community in the midst of the COVID-19 pandemic. Featuring a live Q&A open to a global ALS audience including patients and caregivers from MDA families, the conversation aims to provide the answers to care questions families urgently need in these uncertain times, when this community is among the highest risk for COVID-19.
The Facebook Live will cover topics related to preparedness, community impact, telemedicine, and MDA care and resources. These guidelines will continually be updated on the MDA resource page for COVID-19.
When:
Friday, May 1 at 3-3:30 p.m. ET
Where:
https://www.facebook.com/MDAOrg/
MDA will request questions from the community in forthcoming posts on the @MDAorg Facebook page.
Who:
** panelists available for interview prior to, or following, Q&A**
Matthew B. Harms, MD: Dr. Harms is MDA's Medical Consultant on the strategic Chief Medical Advisory Team. He is MDA's Medical Consultant and Associate Professor of Neurology, Columbia University, and a leading voice in ALS and neuromuscular disease research and care.
- 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.
Why:
The month of May is ALS Awareness Month.
ALS is a disease of the parts of the nervous system that control voluntary muscle movement, including breathing, walking and talking. MDA is one of the largest funders of research and care for ALS for decades and provides ongoing virtual programming, advocacy, resources and facts about ALS for the public.
People living with ALS and related diseases in the neuromuscular disease community (including 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 cancer patients, older adults and those with conditions that affect respiratory health exist, there is a lack of information specific to people living with ALS, and their caregivers. This conversation and Q&A aim to bring those concerns to light.
About the Muscular Dystrophy Association:
For 70 years, 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 MOVR is the first and only data hub that aggregates clinical, genetic, and patient-reported data for multiple neuromuscular diseases to improve health outcomes and accelerate drug 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. Our 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. During the COVID-19 pandemic, MDA continues to produce virtual events and programming to support our community when in-person events and activities are not possible. MDA's COVID-19 guidelines and virtual events are posted at mda.org/COVID19. For more information, visit mda.org.
