September marks “National Muscular Dystrophy Awareness Month,” an annual observance that raises awareness and drives critical fundraising for families across the nation who are living with muscular dystrophy, ALS, and related neuromuscular diseases.
To amplify understanding of these diseases, the Muscular Dystrophy Association (MDA) is sharing a series titled “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.
“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. We are here to empower our families to live fulfilling lives without barriers.”
— Donald S. Wood, PhD, President and CEO of MDA
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.
“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.”
— Kristine Welker, Chief of Staff of MDA
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.
“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.”
— Meredith Wilson, VP, Professional & Community Education
- 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
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.
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
MDA Engage community education programming includes on-demand and live events.
- 9/14, 4-5pm ET, MDA Engage Webinar: Your future, your family and neuromuscular disease
- 9/18, 11am-4:45pm ET, MDA Engage Myasthenia Gravis Symposium
- 9/25, 11am-3:30pm ET, MDA Engage Caregivers Seminar
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’s Access to Coverage: Equipment & Assistive Devices
- Access to Education Workshops for K-12 Education
- Access to Higher Education
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.
[Source(s): Muscular Dystrophy Association, PR Newswire]