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Muscular Dystrophy Association Announces Family Access Programming to Address Barriers for 300,000+ People Living Neuromuscular Diseases Nationwide

NEW YORK, NY – June 8, 2021 – The Muscular Dystrophy Association (MDA) today announced a new series of programming called MDA Access Workshops. The educational workshops will be on-demand and focus on providing resources for over 300,000 families in the U.S. living with muscular dystrophy, ALS, and related neuromuscular diseases, to address access issues and barriers faced regularly. The series will allow individuals to navigate at their own pace through online activities, videos, resources and more. The workshops focus on increasing health literacy, empowerment, and self-advocacy within the community.

The series launched with MDA Access to Equipment and Assistive Devices and is available on-demand here. This workshop provides an overview of obtaining insurance coverage for medical equipment and assistive devices. It covers the general process for obtaining coverage of common items, as well as what individuals can expect if they are faced with a denial on coverage. The workshop is designed so participants can take the full workshop or navigate to a specific area of interest.

"The investment MDA has made in care and research for decades has led to a watershed moment where our community is now living longer," said Susan Schulz, VP/Marketing Director at MDA. "These workshops provide people with tools to self-advocate as adults when it comes to access to health insurance, higher education, and therapies. Educational programming like this is critical to MDA’s mission to support people with neuromuscular disease throughout their lives."

Additional Access Workshops will be available throughout 2021:

SUMMER

• MDA Access to K-12 Education
• MDA Access to Higher Education

FALL/WINTER

• MDA Access to Insurance
• MDA Access to Therapies

"Results from this year’s MDA Access Survey will be announced later this summer, and the respondents helped inform the creation of the content developed for this programming," said Elise Qvale, Director of Professional & Community Education at MDA. "We heard from the neuromuscular disease community that access issues continue to be large barriers, and the intent of these workshops is to assist families through their journey with information and resources that can provide education and empowerment."

Sponsors of the MDA Access to Equipment and Assistive Devices workshop include Hillrom and Permobil Foundation, and the MDA Access to Insurance Coverage workshop is sponsored by Biogen.

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. MDA Advocacy supports equal access for our community, and 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.