September marks the Muscular Dystrophy Association’s (MDA) kick-off of “National Muscular Dystrophy Awareness Month,” an annual observance that raises awareness and critical funds for families across the nation who are living with muscular dystrophy, ALS, and related neuromuscular diseases. Events throughout the month support MDA’s mission to empower the neuromuscular disease community that the organization serves to live longer, more independent lives while accelerating research and advancing care.
“Hope for a longer, more independent life is now becoming a reality for individuals living with muscular dystrophy and related diseases. MDA has made a history of making the impossible possible with more life empowering treatments and cures providing ever more hope for the millions of patients and their families at the heart of MDA’s mission and vision. Muscular Dystrophy Awareness Month is an important time to recognize our longstanding legacy with valued supporters, clinicians, researchers, and many others providing this pipeline of progress that is the hallmark of today’s neuromuscular disease frontier. We are leading the way to faster breakthroughs, and support for MDA’s research is having a life-changing impact on patients. Our model of funding research across neuromuscular diseases means findings from one disease often enable progress in others, maximizing the speed at which we can make progress.” said Donald S. Wood, PhD, CEO, MDA.
The following reflects MDA’s events throughout the month to support MDA’s mission:
MDA Tribute Tour – St. Louis – September 1-4
The MDA Tribute Tour in St. Louis champions the community of volunteers in support of MDA families at the heart of the mission, honors partnerships, and celebrates the medical teams at MDA’s pediatric and ALS Care Centers including at Washington University Medical Center.
Throughout Labor Day weekend, the International Association of Fire Fighters (IAFF) continue the 68-year Fill the Boot tradition, MDA Advocate Madison Lawson will throw out an honorary pitch alongside Donald S. Wood, PhD, President and CEO of MDA at Major League Baseball’s St. Louis Cardinals game, and NBC’s KSDK 5 On Your Side ‘Show of Strength’ will air a two-hour primetime television special on September 4 from 8-10pm CT live from Grant’s Farm to support the MDA. This show marks the 35th anniversary of Mike Bush’s support of MDA as a host of this time-honored Labor Day weekend fundraiser. Donations may be made at MDA.org/ShowOfStrength or text GiveMDA to 314-425-5355 to get the link to donate on your phone. Watch the show live on 5 On Your Side, KSDK.com, KSDK News YouTube, and the new 5+ app for Roku and Fire TV.
“MDA Tribute Tours have celebrated strength in unity, strength in community in Las Vegas, Nashville, Houston, and now St. Louis,” said Kristine Welker, Chief of Staff, MDA. “It’s an honor to kick off National Muscular Dystrophy Awareness Month with this show of strength, gratitude, and admiration for the extraordinary individuals who have been tireless in their efforts to support our St. Louis families and community.”
Public Service Announcements
As the NFL season kicks off, MDA continues distribution of Public Service Announcements with Indianapolis Colts running back Nyheim Hines, who serves as MDA National Spokesperson sharing his deep connection to the mission with family members who live with Limb-girdle muscular dystrophy, alongside MDA National Ambassador Ethan LyBrand who lives with Duchenne muscular dystrophy. PSAs (Public Service Announcement) are available for media here.
Research Grants – September 19
MDA will announce grant recipients for more than $17 million in research funding. The grants will be in areas from development trainee awards for the next generation of scientists, to clinical trial and research support, investigations using genome sequencing and next-generation gene editing technologies, and IDEA grants. Awardees will be announced September 19.
Accessible Air Travel Campaign
According to an MDA survey, 70% of travelers with neuromuscular conditions have experienced problems with accessibility when traveling by air. Broken wheelchairs. Inaccessible seating. Hard to navigate aircraft. For too many in the neuromuscular community, traveling by air is not accessible. MDA is working to make air travel more accessible on multiple fronts because accessible travel is a civil right. MDA regularly joins with other advocacy organizations to call for the enactment of the Air Carrier Access Amendments Act, a bill to make air travel much more accessible. Watch this video and hear from MDA advocates on Accessible Air Travel. Visit mda.org/airtravel to take action.
Newborn Screening (NBS) Awareness Month
MDA Advocacy work aims to expand and improve the newborn screening program, which is vital to ensuring all babies are screened shortly after birth for neuromuscular diseases. Earlier this summer, MDA officially co-sponsored the nomination for Duchenne muscular dystrophy (DMD) to be added to the Recommended Uniform Screening Panel (RUSP) for newborn screening. Watch: MDA Advocacy Institute: The Future of Newborn Screening.
Advocacy Collaboration Grant Application Open
Applications are open for MDA’s newly launched 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.
Advocacy Institute: Know Your Voting Rights session on August 24 at 7pm ET will focus on registration deadlines, accessible polling places, vote-by-mail, plus we will answer questions from the neuromuscular disease community about how to vote during this year’s elections. RSVP here. This will be available on demand in September.
International Myotonic Dystrophy Day – September 15
MDA is a partner in the global alliance for myotonic dystrophy awareness.
Telehealth Awareness Week (TAW) – September 18-24
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.
Virtual Summit and Hill Day – September 28-29
MDA advocates from across the country will meet face-to-face virtually with lawmakers to make their voices heard, at the MDA Summit and Hill Day, urging elected officials to take action on MDA’s legislative priorities from access to care; accelerating therapies; and empowerment and independence for people with disabilities.
In partnership with General Motors, registration is open for young adults ages 16-21 interested in pursuing a career in STEM (Science, Technology, Engineering & Math). Now it its second year, this program gives participants with neuromuscular diseases an opportunity to be a part of a supportive environment centered around connection with experts in STEM fields while learning about different paths for higher education and employment.
- Duchenne Muscular Dystrophy Symposium, September 7 on demand (live Aug. 23/24)
- Dental Health and Neuromuscular Disease, September 8
- Genetic Testing for Becker Muscular Dystrophy, September 15
Quest Media Platform
New issue of Quest magazine and podcasts will be released, and free subscriptions to the monthly newsletter and digital or print versions of the magazine are available here.
“Issue three of Quest magazine is exciting as we spotlight accessible fashion. We spoke with national retailers who are making accessible style a priority. This issue features specific products made with individuals with disabilities in mind and back-to-school styles including a collaboration with Koolway Sports offering MDA community members custom all-weather capes for free,” said Mindy Henderson, Editor-In-Chief of Quest Media at MDA. “Accessible style and fashion allow for a more independent lifestyle for the disability community, and this being MDA’s ‘Year of Independence,’ Quest is talking to top brands in the space as momentum builds in this market.”
- Quest issue 3 content includes topics such as Managing Stress and Anxiety; Exercise and NMD; Research 101: MDA’s funding of research breakthroughs; Online Exclusive: Social Wellness/Accessing Extracurricular Activities for Your Child this School Year; Spotlight: FSHD; Thrive 365: Self Esteem & Back to School Accessible Clothing
- Quest Blog will feature Easy Recipes and Meal Prep; Hygiene and Wellness; Respiratory Health and NMD (neuromuscular disease); MDA Let’s Play interview with Charlie Harley; and the popular Quest for Success series will feature high school and college editions
- Quest Podcast will feature our MDA Let’s Play gaming community member Charley Harley, host Beaniez, and executive producer Larry Lieberman
30 Days of Strength
NCAA athletes will engage on social media throughout the month to raise awareness through the #30DaysOfStrength campaign.
IAFF Fill the Boot
The International Association of Fire Fighters (IAFF) in partnership with MDA for 68 years, will hold more than 250 #FillTheBoot events to raise lifesaving funds throughout Labor Day weekend in over 25 states, as part of Muscular Dystrophy Awareness Month. The funds raised by more than 330,000 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. Find a Fill the Boot team and donate here.
NALC Branch Challenge
The National Association of Letter Carriers (NALC) is the representing union of professional members of the United States Postal Service who deliver mail to homes and businesses across the United States. In 1952, NALC became MDA’s first national sponsor and declared it the NALC’s official charity. NALC continues its commitment to MDA’s mission through Branch Challenges during the year with the next one beginning October 1st. Find your local NALC branch and support their efforts to #DeliverTheCure here.
MDA Muscle Walk, Golf, and Gala Events
MDA Muscle Walks, Golf and Gala Events are inspiring occasions that unite communities. Upcoming events include:
- September 8 – Savannah Toast to Life, Savannah, GA
- September 14 – Meridian Clinical Research Omaha MDA Golf Classic, Omaha NE
- September 17 – Muscle Walk of Minnesota, Twin Cities, MN
- September 20 – Nashville Muscle Team Gala, Nashville, TN
- September 21 – Boston Muscle Team Golf Outing, Plymouth, MA
- September 23 – First Annual Hayes Festival & Motorcycle Rally, Mequon, WI
- September 25 – Muscle Walk of Massachusetts, Boston Commons, Boston, MA
- September 26 – Colony Hardware Golf Outing, Rochester, MI
- September 26 – Tanks Direct FFMD Muscle Classic Golf Tournament, Queenstown, MD
MDA Let’s Play is a community united by the love of gaming and support for MDA’s mission. The community plays weekly game nights on Saturdays at 7pm ET. On World Duchenne Day, September 7, streamer Charlie Harley, who lives with Duchenne muscular dystrophy, will host a fundraiser for the MDA as part of Muscular Dystrophy Awareness Month. Join the community on Twitch.
[Source(s): Muscular Dystrophy Association, PR Newswire]