New York, Aug. 26, 2024 (GLOBE NEWSWIRE) -- September marks the kick-off of the Muscular Dystrophy Association (MDA) ‘National Muscular Dystrophy Awareness Month’ to raise awareness and critical funds for families across the nation who are living with muscular dystrophy. This includes ALS (aka Lou Gehrig’s disease), Charcot-Marie-Tooth disease (CMT), Duchenne muscular dystrophy (DMD), Emory-Dreifuss muscular dystrophy (EDMD), limb-girdle muscular dystrophy (LGMD), myotonic dystrophy (DM), spinal muscular atrophy (SMA), and many more.
Opportunities for engagement include ‘30 Ways for 30 Days’ with initiatives to advance research, care, and advocacy through hundreds of events during the month to support the mission to empower the neuromuscular disease community to live longer, more independent lives. Through research, support for over 150 MDA Care Centers, advocacy and more, MDA will raise awareness and funds. Donations to the ‘30 Days of Strength’ campaign may be made here: MDA.org/30days.
"As we mark Muscular Dystrophy Awareness Month this September, we celebrate the significant progress Muscular Dystrophy Association has made, and the strong sense of community we have built together. Thanks to the support of our researchers, medical teams, partners, sponsors, volunteers, Board of Directors, and staff, we now stand in an era of effective treatments. Our commitment to advancing research, providing support, and raising awareness is resolute," said Donald S. Wood, PhD, President and CEO, MDA.
Social Media
Throughout the month, MDA will recognize specific disease awareness days and months including World Duchenne Day 9/7, Myotonic Dystrophy Awareness Day 9/15, Telehealth Awareness Week 9/15-21, OPMD Awareness Day 9/23, International Ataxia Awareness Day 9/25, Limb-girdle Muscular Dystrophy Day 9/30, Newborn Screening Awareness Month, Charcot-Marie-Tooth disease Awareness Month, National Preparedness Awareness Month and more. The ‘30 Days of Strength’ campaign will include community and influencer engagement on MDA social media channels. Follow along at @MDAorg using #30DaysOfStrength.
"Highlighting our mission and fundraising initiatives during Muscular Dystrophy Awareness Month allows the Muscular Dystrophy Association to spotlight programs that bring measurable value to our community and beyond. By sharing dynamic opportunities including ‘30 Ways in 30 Days’ to activate their networks, we empower our supporters to engage and unleash their creativity to fuel our momentum," said Morgan Roth, Chief Marketing Officer, MDA.
September Events and Initiatives
Register for MDA Fundraising and Community Events here.
August 31-September 2, Labor Day Weekend – IAFF Fill the Boot
·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 349,000 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.
September 1, 8-10 p.m. CT – NBC KSDK Show of Strength in St. Louis, Missouri
- 5 On Your Side’s annual Show of Strength benefits MDA’s mission. Anchor Mike Bush will again host the “MDA Show of Strength” with co-hosts Anne Allred, Rene Knott, and Scott Connell at Grant’s Farm. This will be Bush’s 38th year hosting the show. Thousands of people in the St. Louis area are helped by the MDA each year.
- Tune in on Sunday, Sept. 1 from 8-10 p.m. to the livestream on 5+ and the station’s YouTube channel.
- Donations may be made here or Text ‘DONATE’ TO 314-425-5355
September 3 and all month online – MDA Let’s Play online
- MDA Let’s Play is a community united by the love of gaming. Throughout September community-submitted photos and stories from MDA Summer Camp, family summer adventures, and back-to-school highlights will be shown on Discord and Twitch channels each Saturday night at 7pm ET.
- Tuesday, September 3, a special “Painting with Pyra” art event featuring submissions and digital drawing lessons will be featured.
- Daily gaming and online activities all month long include JackBox, Roblox, Minecraft, Fortnite and more at http://discord.gg/MDALetsPlay.
September 8-10 – MDA on the Hill in Washington, D.C.
- Over 100 advocates from over 25 states will convene in Washington, D.C. to speak with legislators on Capitol Hill for the neuromuscular disease community priorities including: supporting the SSI Savings Penalty Elimination Act, Rare Pediatric Disease Priority Review Voucher reauthorization, and Accelerating Kids Access to Care Act for streamlined access to care across state lines for children on Medicaid. To sign up to advocate with MDA, visit MDA.org/Advocacy
- MDA’s Access the Vote Campaign continues to provide tools and resources for the disability community to have access to voting at MDA.org/Vote
September 20-22 – Virtual Release of Good Bad Things film
- Link to purchase tickets here. The event starts at 6:00 p.m. PT on Friday, September 20 with a livestreamed premiere, and end at 11:59pm PT Sunday, September 22.
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- With ticket purchase, film and additional content will be available to watch/rewatch between September 20, through 22, 11:59 p.m. PT.
- Tickets are $19.99 and 25% of every ticket sold goes towards MDA’s mission.
- September 20 post-screening (7:45 p.m. PT) features live Q&A hosted by executive producers Hannah and Shane Burcaw with director, Shane Stanger, lead cast Danny Kurtzman, Jessica Parker Kennedy, Bret Dier, with executive producer Steve Way.
Quest Media will feature new podcasts, newsletters, Issue 3 of Quest Magazine and a new Holiday Product Guide, read more here:
- Quest Magazine Issue 3
- Quest Holiday Guide
- Quest Podcast
- Subscribe for free here
Public Service Announcement (PSA):
MDA’s PSA features 2024 National Spokesperson, Cleveland Browns Running Back, Nyheim Hines, click here to download and air the video.
Resources and Guidance: The MDA Resource Center is 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 appointment with MDA Connect here.
MDA is grateful for ongoing support from:
Transformer Support: International Association of Fire Fighters, CITGO Petroleum Corporation
Visionary Support: Dutch Bros. Coffee, Acosta Group, Albertsons Companies Foundation, Mansfield Cares, National Association of Letter Carriers
Leader Support: Biogen, Burn Boot Camp, Genentech, QFC, Ed Morse, Fareway Stores Meat & Grocery, Circle K South Atlantic, Sarepta Therapeutics
Innovator Support: argenx, Edgewise Therapeutics, General Motors, Mitsubishi Tanabe Pharma America, Pfizer, PTC Therapeutics, Shaw’s and Star Market, Sundt Construction, Sampson Bladen Oil Co,
Champion Support: Harris Teeter, Price Chopper Freihofer's / CITGO-Graham Enterprise, Inc., Florida Turnpike Services, Pete’s Market, GPM, CITGO - APEC (Automated Petroleum & Energy Corp), Fulcrum Therapeutics, Scholar Rock, UCB
For more information, please contact press@mdausa.org.
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, Strategic Communications Muscular Dystrophy Association press@mdausa.org
