New York, Aug. 28, 2023 (GLOBE NEWSWIRE) -- September marks the Muscular Dystrophy Association’s (MDA) kick-off of "National Muscular Dystrophy Awareness Month," to raise awareness and critical funds for families across the nation who are living with muscular dystrophy, ALS (aka Lou Gehrig’s disease), and related neuromuscular diseases. Hundreds of events throughout the month support MDA’s mission to empower the neuromuscular disease community to live longer, more independent lives through advocacy, strategic funding to accelerate research and support for over 150 MDA Care Centers. The organization also announced Board approval for $8.4 million in research grants to be announced in September.
Donations to support the mission of MDA during the 30 Days of Strength campaign may be made here: MDA.org/30days
“Since 2015 there have been more than 20 FDA treatments approved for neuromuscular diseases due in part to the decades of heartfelt dedication from Muscular Dystrophy Association through our strategic funding of research, care, and advocacy. This year under the umbrella of our MDA Care Center Network, we expanded our MDA Resource Center to guide and support families considering novel treatments in gene therapy. The new MDA Gene Therapy Support Network is here to help connect with families one-on-one to navigate these new treatments. Steadily and successfully, MDA has delivered increasingly on the hopes and dreams of the people we serve. One thing has never changed – and never will – is our commitment to the promise of research and emerging therapies to treat – and one day, cure – neuromuscular disorders that are genetic in nature. Our leadership in genetic medicine and neuromuscular disease research is bringing new hope and possibilities to everyone living with these diseases, and empowering people to live longer, more independent lives. For more than 70 years, MDA’s mission to empower the people we serve to live longer, more independent lives remains a constant source of hope. MDA funded genetic research even in the early days when others were unconvinced of its potential. Because of MDA’s investment in gene-based therapies and data collection, many gene therapy trials are underway in what we call the pipeline of promise. We hope you join us throughout September as we celebrate 30 Days of Strength,” said Donald S. Wood, Ph.D., President and CEO, MDA.
Watch Dr. Wood’s video message about Muscular Dystrophy Awareness Month here.
MDA’s Events Throughout September
Fundraising:
30 Days of Strength: MDA.org/30days
Throughout September, community and other influencers including MDA National Spokesperson Nyheim Hines, running back for the NFL Buffalo Bills and college athletes will shine a spotlight on the work we do year-round to raise awareness and funds for the mission on social media channels using #30DaysOfStrength.
“The Muscular Dystrophy Association plays a vital role in empowering people living with muscular dystrophy, advocating for improved care, treatments, and accessibility, and driving advancements in genetic medicine. With multidisciplinary care centers, groundbreaking research, and a longstanding commitment to genetic medicine, MDA was instrumental in funding the research that led to the first-ever genetic therapy for muscular dystrophy earlier this year. Together, for my mom and family members who have lived with or are living with neuromuscular disease, through the power of community and collective efforts, we will create a future where people can live longer, more independent lives,” said Nyheim Hines, MDA National Spokesperson and running back for the NFL’s Buffalo Bills.
View the PSA with MDA National Spokesperson, running back for the NFL’s Buffalo Bills, Nyheim Hines here.
DIY Fundraise Your Way
Do it yourself (DIY) fundraising continues as volunteer advocates raise their voices to share the mission, including MDA Ambassador Billy Zureikat who lives with limb-girdle muscular dystrophy and says, “I’ve grown so much in the past two years since my LGMD diagnosis. There are five things I want everyone to know about being diagnosed with a neuromuscular disease: 1. It's okay to grieve; 2. There is nothing wrong with accepting help; 3. You are not alone; 4. Find what works well for you; 5. Adjust and adapt. Read more in his Quest Blog here. Donate to his DIY fundraiser for MDA here.
International Association of Fire Fighters (IAFF)
The Muscular Dystrophy Association (MDA) in partnership with the International Association of Fire Fighters (IAFF) more than 420 Fill the Boot events will raise lifesaving funds throughout Labor Day weekend in over 40 states. The funds raised by more than 339,000 IAFF members and their affiliates across the country go towards MDA's mission for scientific and clinical research and care for families living with muscular dystrophy, ALS, and related neuromuscular diseases. Online donations, which may be made at mda.org/ftb will continue as fire fighters take to the streets in communities across the country with boots in hand asking pedestrians, motorists, customers, and other passersby to support the mission.
MDA Muscle Walk, Golf, and Gala Events
MDA Muscle Walks, Golf and Gala Events are inspiring occasions that unite communities. Upcoming events include:
- September 14 – Enterprise Holdings Golf Outing, Montgomery, AL
- September 15 – Sam Osborn Memorial Golf Tournament, Omaha, NE
- September 17 – Muscle Walk of Massachusetts, Boston, MA
- September 20 – Boston Muscle Team Golf Outing, Manorville, NY
- September 25 – Tanks Direct Muscle Classic Golf Tournament, Queenstown, MD
- September 29 – Dallas Uncork a Cure Gala, Irving, TX
Research Grants:
MDA Board approves 37 research grants totaling $8.4 million toward neuromuscular disease research to advance research discoveries and new therapy development in amyotrophic lateral sclerosis (ALS), Charcot-Marie-Tooth disease (CMT), Duchenne muscular dystrophy (DMD), Emory-Dreifuss muscular dystrophy (EDMD), limb-girdle muscular dystrophy (LGMD), spinal muscular atrophy (SMA), myotonic dystrophy (DM), and many more.
“We’re proud to announce Board approval for $8.4 million in research funding. The grants include development trainee awards for the next generation of scientists, and research support including investigations into the development of better endpoints for ALS, blocking the effects of the mutation that causes myotonic dystrophy, and exploring changes in the muscle of people with spinal muscular atrophy,” said Sharon Hesterlee, Ph.D., Chief Research Officer, MDA.
Advocacy:
Accessible Air Travel
Congress must reauthorize the Federal Aviation Act (FAA) by September 30, 2023, to avoid interruptions in air travel. FAA reauthorization presents a prime opportunity to enact provisions that would greatly improve the accessibility of air travel for people with disabilities, especially for those who use wheelchairs.
Earlier this year, MDA brought advocates to Capitol Hill to urge their lawmakers to include accessibility provisions in this year’s FAA reauthorization. In addition, MDA released a powerful video featuring MDA and disability rights advocate Madison Lawson, which vividly shows the experience people living with disabilities face when traveling by air. This video has approximately 2 million views across multiple platforms. The public can take action at www.mda.org/AirTravel to contact their lawmaker.
Newborn Screening (NBS) Awareness Month
MDA Advocacy aims to expand and improve the newborn screening program, which is vital to ensuring all babies are screened shortly after birth for certain neuromuscular diseases. Earlier this summer, MDA was pleased that the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (ACHNDC) voted to move the nomination of Duchenne muscular dystrophy for the Recommended Uniform Screening Panel (RUSP) onto the next stage of review. The nomination now moves on to the “Evidence-based Review” stage (also known as “full evidence review”) in which the Committee examines the nomination further and ensures it is ready for recommendation to the RUSP.
2023 Advocacy Collaboration Grant Application Opens
Applications are open for the 2023 MDA’s Advocacy Collaboration Grants. This program will provide financial support for key initiatives in cooperation with fellow advocacy organizations and partners to improve the lives of the neuromuscular community.
Telehealth Awareness Week (TAW) – September 17-23
MDA is an endorsing partner of Telehealth Awareness Week, which will put a spotlight on the many ways virtual care helps support access to safe, quality care for diverse communities of patients and healthcare providers. Telehealth is an important access point for MDA families throughout our MDA Care Center Network. View the TAW Resource Center and access the official TAW social media/marketing toolkit available for download here.
“This year’s Muscular Dystrophy Awareness Month will feature not only celebrations and acknowledgements of the importance of newborn screening and telehealth to the neuromuscular disease community, but also potential landmark legislation signed into law revolutionizing accessible air travel for those with disabilities,” said Paul Melmeyer, Vice President, Public Policy and Advocacy, MDA.
Education:
Mentorship Programs
MDA’s Mentorship Program aims to increase the number of people living with neuromuscular disease in the workforce by connecting youth to mentors who are established in a variety of fields, while providing hands-on learning in a supportive environment to discover their strengths and interests. These five-week programs are held virtually and are open to youth and young adults with neuromuscular disease ages 14-21. An application is required, but there is no cost to participate.
The next MDA Mentorship session will be Career Explorations, from September 11–October 9. For youth ages 14-18, this session will explore various career paths such as business, marketing, technology, medicine and more. Participants will rotate through several mentorships while completing hands-on activities to discover their strengths and interests in various fields. Register for the mentorship program here.
MDA Engage Symposium
MDA Engage Symposiums are full-day, multi-session programs with both disease-specific learning tracks and general learning tracks that are applicable to all neuromuscular diseases. Each Engage Symposium provides up-to-date information from experts in the field, empowering learners with actionable information to support their, or their loved ones’ care and life goals. Attendees will also have the opportunity to connect with other individuals and families impacted by neuromuscular disease and explore exhibitor booths to learn more.
Join MDA and Keynote Speakers Peter Karachunski, MD, and Peter Kang, MD, University of Minnesota on Saturday, September 23 from 9:00am-4:30pm ET at the McNamara Alumni Center in Minneapolis, MN. Register for the event here.
MDA thanks our symposium supporters: Edgewise Therapeutics and Sarepta Therapeutics.
MDA’s Quest Media is an award-winning adaptive lifestyle platform dedicated to providing empowering content and resources for individuals and families living with disabilities. Issue 3 of Quest magazine is now live here. In September, a new Quest Podcast will be released featuring journalist, model, and MDA Ambassador and advocate, Madison Lawson. MDA National Ambassador, Amy Shinneman is featured with a story on the power of being unique in the guest blog here. Free subscriptions to the monthly newsletter, blog, and print versions of the magazine are available here.
MDA Let’s Play:
MDA Let’s Play is a community that brings people together through their shared love for online content, like gaming, while also supporting the MDA mission. The community plays weekly game nights on Saturdays at 7pm ET. There will be a special night of fundraising by MDA Ambassador, Charlie, who lives with Duchenne muscular dystrophy, on World Duchenne Day, September 7. Join the community on Twitch.
Resources:
MDA Resource Center and MDA Gene Therapy Support Network are available for support for the neuromuscular community by phone at 1-833-ASK-MDA1 (1-833-275-6321), email at ResourceCenter@mdausa.org and by virtual 1:1 appointments with MDA Connect here.
Social Media:
Throughout the month of September, an informational toolkit will be shared on MDA’s national and local social media channels including #30DaysOfStrength and is available for community use here.
Follow @MDAorg on social media throughout the month of September to amplify conversations including the following dates:
- September 7 #WorldDuchenneAwarenessDay
- September 15 #MyotonicDystrophyDay
- September 25 #InternationalAtaxiaAwarenessDay
- September 30 #LGMDday
BBB Wise Giving Alliance:
Muscular Dystrophy Association achieved accreditation from BBB Wise Giving Alliance, highlighting excellence in leadership, finances, and mission-driven work. View MDA on Give.org here.
The BBB Wise Giving Alliance (BBB WGA) is the nation’s only comprehensive charity evaluator, assisting donors in making sound giving decisions. Donors know they can trust a charity if it is accredited by the BBB WGA.
“The public can be assured that every charity evaluation is completed with careful, objective analysis of charity information,” says Art Taylor, president and CEO of the BBB Wise Giving Alliance. “By achieving accreditation, Muscular Dystrophy Association has earned public trust having demonstrated its commitment to sound governance, transparency and achieving its mission.”
Watch Dr. Wood’s interview with BBB Give.org’s CEO Art Taylor here.
MDA is grateful for ongoing support from:
Transformer support: CITGO Petroleum Corporation, Acosta Group, Albertsons Companies Foundation, Dutch Bros Coffee, International Association of Fire Fighters
Visionary support: Burn Boot Camp, Genentech, Harley -Davidson Motor Co., Mansfield Cares, National Association of Letter Carriers, Pfizer, Sarepta Therapeutics, Sundt Construction, Inc., QFC
Leadership support: Circle K, Ed Morse Automotive Group, Fareway Meat & Grocery, General Motors, Harris Teeter, Liberty Mutual, Mitsubishi Tanabe Pharma America, Omaha Meridian Clinical Research, Price Chopper, PTC Therapeutics, Sampson Bladen, Shaws and Star Market, Reata Pharmaceuticals Inc., Edgewise Therapeutics, Biogen
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About Muscular Dystrophy Association
Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and related neuromuscular diseases. For over 70 years, MDA has led the way in accelerating research, advancing care, and advocating for the support of our families. MDA's mission is to empower the people we serve to live longer, more independent lives. To learn more visit mda.org and follow MDA on Instagram, Facebook, X, Threads, TikTok, LinkedIn, and YouTube.
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Mary Fiance, Vice President, Public Relations Muscular Dystrophy Association press@mdausa.org
