MDA Frontline COVID-19 Response: Facebook Live Q&A to Protect the Neuromuscular Disease Community in Reopening with Dr. John W. Day on Monday, June 15 at 3pm
NEW YORK, June 10, 2020 /PRNewswire/ --
What:
The Muscular Dystrophy Association (MDA) invites you to join a special virtual conversation on Facebook Live featuring MDA Medical Consultant Dr. John W. Day and MDA Director of Care Center Programs, Marydeth Guerin, about:
- Reopening and COVID-19 and the impact on the neuromuscular disease community
- Pediatric Concerns around COVID-19
- Review of pulmonary guidelines for neuromuscular disease community
Featuring a live Q&A open to a global audience including patients and caregivers from MDA families, the conversation aims to provide answers and resources families urgently need in these uncertain times, when this community is among the highest risk for COVID-19.
The Facebook Live will also 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:
Monday, June 15 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**
- Dr. John W. Day is MDA's Medical Consultant on the strategic Chief Medical Advisory Team. He is the professor of neurology and pediatrics and director, Division of Neuromuscular Medicine at Stanford University and directs Stanford's MDA Care Centers, which uniquely integrate the Lucile Packard Children's Hospital Pediatric and Transitional Neuromuscular Clinic with the Stanford Hospital Neuroscience Health Center's Neuromuscular and ALS Research and Clinic.
- Marydeth Guerin is MDA's Director of Care Center programs, overseeing MDA's National Care Center Network program, which includes management of grants, engagement, and oversight of the network infrastructure and operations. She also serves as Chair of the MDA Care Center Review Committee and manages strategic planning for the network in close collaboration with MDA's Chief Medical Advisors and executive leadership.
Why:
The neuromuscular disease community (including muscular dystrophy, SMA, Duchenne and related diseases such as ALS (aka Lou Gehrig's disease) – 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 neuromuscular diseases and their caregivers. This conversation and Q&A aim to bring those concerns to light as MDA continues to be on the frontlines serving this community of over 250,000 in the United States.
Sponsorship:
Sanofi Genzyme and Amicus are proud sponsors of this event.
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, including virtual summer camp. MDA's COVID-19 guidelines and virtual events are posted at mda.org/COVID19. For more information, visit mda.org.
SOURCE Muscular Dystrophy Association
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