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Facebook Live @MDAorg on Mental Health for the Neuromuscular Community

Hosted by Justin Moy with Rebecca Axline, Houston Methodist Neurological Institute and Jessica Edwards, National Alliance on Mental Illness (NAMI) Tuesday, October 13 at 3pm ET

NEW YORK, NY – Tuesday, September 29, 2020

What:

The Muscular Dystrophy Association (MDA) invites you to join a special virtual conversation with experts from National Alliance on Mental Illness (NAMI) and our MDA Care Center at Houston Methodist, for a special Facebook Live on mental health for the neuromuscular community on Tues, Oct 13 at 3pm ET. The discussion is hosted by alumni MDA National Ambassador and student at Worcester Polytechnic Institute Justin Moy, with panelists Rebecca Axline, licensed clinical social worker from MDA Care Center at Houston Methodist Neurological Institute and Jessica Edwards from the National Alliance on Mental Illness.

The discussion will include:

• • Focus on mental health for people living with neuromuscular diseases during COVID-19 pandemic
  • Caregiver mental health
  • Strategies and coping skills to handle emotions and feelings of isolations
  • Online mental health resources
  • Mental Health via Telehealth resources at MDA Care Centers
  • Preparedness and guidelines on the MDA resource page for COVID-19

Featuring a Q&A open to a global audience including patients and caregivers from families and caregivers living with neuromuscular diseases, 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.

When:

Tuesday, October 13 at 3pm ET

Where:

https://www.facebook.com/MDAOrg/

MDA will request questions from the community in forthcoming posts on the @MDAorg Facebook page.

Who:

Host/Moderator: Justin Moy
Guests: Rebecca Axline, Clinical Social Worker at Houston Methodist MDA Care Center; Jessica Edwards, NAMI, Director, External Relations, Strategic Alliances

Event sponsor: Mitsubishi Tanabe Pharma America, Inc., Sanofi Genzyme, Biogen

** Host and panelists are available for interview prior to, or following, Q&A**

• Justin Moy, a junior at Worcester Polytechnic Institute majoring in bioinformatics and computational biology. Mr. Moy is studying to become a biochemist and go into academic research or work for a pharmaceutical company so he can help find a cure for his disease congenital muscular dystrophy (CMD), and other neuromuscular diseases. Justin served as MDA's National Ambassador in 2018-19 and is an active MDA Advocate.
• Rebecca Axline has 40 years of clinical and management experience working in a variety of settings including medical centers, active duty military bases, VA centers, employee assistance, hospice, and school districts. Her role since 2006 has been the development of outpatient Social Work at Houston Methodist Neurological Institute. She provides program development and clinical intervention with a focus of supporting patients and family members cope with the stress of diagnosis and treatment of neurological disorders.
• Jessica Edwards is the Director of External Relations for NAMI, the National Alliance on Mental Illness. She has been with the organization for nearly a decade and feels passionately that mental health conditions need to be treated as any other medical issue. She focuses her talents on building relationships with NAMI’s corporate, foundation and strategic partners.

Why:

The COVID-19 pandemic continues to cause stress for everyone. Fear and anxiety about a new disease and what could happen can be overwhelming and cause strong emotions in adults and children. Adhering to safety guidelines is especially isolating for the neuromuscular community and extremely difficult in caregiving situations. Finding healthy ways to cope with the emotional affects is critical.

The neuromuscular disease community (including people with muscular dystrophy, CMD, 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. MDA continues to be on the frontlines serving this community with research, care, and advocacy for over 300,000 people in the United States.

About the Muscular Dystrophy Association

For 70 years, the Muscular Dystrophy Association (MDA) has been committed to transforming the lives of people living with 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.