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Muscular Dystrophy Association Kicks Off National Muscular Dystrophy Awareness Month Announcing Access Survey Data, Community Education, and Events

NEW YORK, NY, August 30, 2021 -- September marks "National Muscular Dystrophy Awareness Month," an annual observance that raises awareness and drives critical fundraising for more than 300,000 families across the nation who are living with muscular dystrophy, ALS, and related neuromuscular diseases.

MDA Access Survey Key Findings
MDA Access Survey Key Findings

To amplify understanding of these diseases, the Muscular Dystrophy Association (MDA) is sharing a series entitled "My Powerful Story" featuring stories from the community; producing education, advocacy and fundraising events; and releasing data from the MDA Access Survey demonstrating key findings from the community around items such as insurance coverage, finances, employment, education and additional barriers to access for people living with disabilities.

Jonathan Lengel shares his story in MDA's "My Powerful Story" series for Muscular Dystrophy Awareness month.

"We're proud of the extensive campaign we are launching in September to elevate awareness of people living with neuromuscular diseases. The stories we will share throughout the month will elevate the powerful narrative of our families and the survey data helps us evolve as an organization to serve our community, to advocate, educate and continue to raise awareness and funds for breakthrough research and care," said Donald S. Wood, PhD, President and CEO of MDA. "We are here to empower our families to live fulfilling lives without barriers."

MDA has paved the groundwork for the field of neuromuscular disease over seven decades and that investment has led in part to 14 new FDA approved treatments in just the past six years alone for neuromuscular diseases. Today, there are more clinical trials than ever before and more drugs in the pipeline.

"September is an important time for MDA with key milestone events and longstanding traditions that have helped to elevate our mission for decades. We are proud to build on our innovative roots through new programs – like MDA Takes Vegas on September 4," said Kristine Welker, Chief of Staff of MDA. "When we share community stories, we promote understanding and inclusion for people living with disabilities, and MDA continues to lead the way with compelling data that advances new treatments and care. The MDA Access Survey will further grow our efforts and commitment to meet the needs of our community of all ages, who today, are living longer and growing stronger."

MDA ACCESS SURVEY

More than 2,800 individuals living with neuromuscular disease, caregivers and families responded to the national MDA Access Survey providing input on areas of their lives where they were experiencing barriers to access. The survey was fielded by MDA and analyzed by Edge Research, an independent research company.

"We use this survey to gauge how our community is navigating changes in everything from medical reimbursements to education advancements. These insights further shape the initiatives we offer to our community, especially in our educational and advocacy efforts. We heard from two-thirds of our respondents who attended higher education within the last five years that they want more information about the process for funding and personal assistance, and 51% of our survey respondents reported being denied covered services under their insurance and 66% want more resources to support diversity and inclusion of the disability community at work," said Meredith Wilson, VP, Professional & Community Education. "Our team is actively engaging in evaluating all of our programs to ensure that these issues and many more are being addressed in the programs we offer over the next several years."

FUNDRAISING

  • Labor Day Weekend, the historic partnership with the IAFF to Fill the Boot continues in cities across the country.
  • 9/4, 4pm ET-midnight, MDA Takes Vegas will be streamed live on Twitch.tv/mda_letsplay and fans are invited to view the live gameplay and donate through Crowd Control to affect the game. Follow @MDALetsPlay on Twitter to stay informed and visit mda.org/lets-play for more information. The event will stream live from the HyperX Esports Arena Streamer Studio at the Luxor Hotel and Casino, and the MDA Let's Play channel on Twitch will harness the power of gaming and streaming and host eight hours of competitions, giveaways and celebrity and surprise guest appearances. Internationally renowned gamers Alpharad and Terroriser join MDA Let's Play host Beaniez, and 2021 MDA National Spokesperson, Nyheim Hines, a fan of gaming with the MDA Let's Play community, with guests including players from the Las Vegas Aviators baseball team, former Raiders team player Anttaj ‘Taj' Hawthorne, members of the International Association of Fire Fighters, Twitch creators,12-year-old MDA National Ambassador Ethan LyBrand, and more! Donations may also be made directly to MDA at mda.org/vegas.

COMMUNITY STORIES AND PSA CAMPAIGN

MDA recognizes the power of story to create connection, inspire self-advocacy and build understanding for what it's like to live with neuromuscular disease. In a unique campaign, the organization requested stories from members of the neuromuscular community and partnered with artists and the company theDifference to animate them. This series entitled "My Powerful Story" features Jonathan Lengel, Brittany Sharp, Tana Zwart and Suzanne Rood. The series will be shared on social media using the hashtag: #MyPowerfulStory. Thank you to Genentech for supporting this program.

MDA's new PSA campaign features national spokesperson, Nyheim Hines, Indianapolis Colts running back, who has a personal connection to neuromuscular disease. Hines is helping to drive awareness of the need to improve care and advance research to find treatments and cures for muscular dystrophy, ALS and over 43 related neuromuscular diseases. Hines' mother lives with limb-girdle muscular dystrophy (LGMD), and is included in the video and audio PSAs, available for media here, through the end of 2021.

ADVOCACY

Throughout the month of September, MDA will continue advocacy initiatives from newborn screening to access to healthcare, education, accessible air travel, employment and more.

  • 9/30, 4pm ET, MDA Advocacy Institute: Legislative Agenda
  • 9/14-25 - Telehealth Awareness Week
    During the inaugural Telehealth Awareness Week, the American Telemedicine Association will present the Virtual Patient Perspective webinar on Friday, September 24 at 2 p.m. ET. The panel discussion will feature perspectives from advocacy leaders and patient communities on the value telehealth brings to supporting broader access to safe, quality care for everyone who needs it. Mindy Henderson, Muscular Dystrophy Association’s Editor-In-Chief of Quest content, will join the panel to discuss the impact telehealth has had on the neuromuscular community.

COMMUNITY EDUCATION

MDA Engage community education programming includes on-demand and live events.

MDA Access Workshops is a community education program created to provide information and resources on overcoming barriers to a variety of access topics while being specifically built for the neuromuscular disease community. These workshops are on-demand. They will allow individuals to navigate at their own pace through online activities, videos, quizzes and more. The workshops focus on increasing health literacy, empowerment, and self-advocacy within the community.

MDA Quest Podcast is a newly launched and powerful vehicle to present thoughtful conversation regarding issues and barriers facing members of the neuromuscular disease and other disability communities as well as the people who love them. Motivational speaker, author, writer and podcast host, Mindy Henderson, who lives with spinal muscular atrophy (SMA), is the host of the MDA Quest Podcast. Mindy is also the MDA Editor-in-Chief of Quest content, including a quarterly magazine, blog, newsletter, and this podcast.

Thank you to the following partners for their annual support of the Muscular Dystrophy Association:

Transformer support is provided by IAFF and CITGO Petroleum Corporation.

Visionary support is provided by Harley-Davidson Motor Company, Acosta, Dutch Bros., Albertsons Companies Foundation, and the NALC.

Leader support is provided by 7-Eleven, Burn Boot Camp, Harley-Davidson Eastern Dealers Association, Jiffy Lube and MDA Ride for Life.

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.