Muscular Dystrophy Association

Thank You for an Incredible Breakthroughs in Muscular Dystrophy Conference! We are deeply grateful to all the researchers, clinicians, industry partners, and attendees who made this year's conference a remarkable success. The breadth and depth of scientific advancement shared over these days has been truly inspiring. This conference highlighted extraordinary progress in the field, from groundbreaking clinical trial results to innovative therapeutic approaches. We saw encouraging data from multiple gene therapy trials, bringing hope to patients and families affected by #Duchenne muscular dystrophy. The presentation of novel delivery technologies, from engineered AAV capsids to ultrasound-mediated approaches, demonstrated our field's commitment to overcoming current therapeutic limitations. Particular appreciation goes to our keynote speakers, Drs. Carsten B?nnemann and Louis Kunkel. Over the course of 1.5 days, we learned about: - Next-generation gene editing technologies - Advanced delivery systems - Novel therapeutic approaches - Disease mechanism insights - Improved preclinical models The progress shared at this conference gives us great optimism for the future of #musculardystrophy treatment. Thank you all for your dedication to advancing this critical field of medicine! Muscular Dystrophy Association

Empowering the next generation of leaders! Muscular Dystrophy Association National Ambassador Leah J. Zelaya and her parents Jamie and Bevi, recently visited Henry Viscardi School, joining Dr. Chris Rosa, President & CEO of The Viscardi Center and proud MDA Board Member, to inspire rising juniors and seniors who have demonstrated exceptional leadership. Leah shared her story of determination and ingenuity, reminding students that no matter the challenges they face living with disabilities, resilience and creativity can open doors to endless possibilities. Dr. Rosa not only led a heartfelt discussion about overcoming challenges and embracing gratitude as we approach the Thanksgiving holiday but also gave an in-depth tour of Henry Viscardi School ant The Viscardi Center. He shared the rich history and sheer determination of Dr. Henry Viscardi, Jr., the trailblazer behind this remarkable institution. For decades, The Viscardi Center has been a leader in the disability inclusion movement—values that deeply align with MDA's mission of empowerment and inclusion. ? We are grateful for the opportunity to connect with such talented and driven students. Together, we are building a more inclusive and empowered future. #MDA #Leadership #Gratitude #Inclusion #DisabilityAdvocacy ? ?? by aaron tomlinson

We're thrilled to announce that the Muscular Dystrophy Association's #AccessibleAirTravel campaign has won the Gold Honor at the 9th Shorty Impact Awards in the Call-to-Action category! This recognition is awarded to purpose-driven campaigns that drive positive change and make the world a better place. Learn more about our campaign here: https://lnkd.in/gMVVEZiS This campaign was instrumental in creating awareness and taking action to ensure that the most significant improvements in air travel in the past 40 years were passed and signed into law in the Federal Aviation Administration Reauthorization. This campaign sparked a powerful movement, advocating for greater inclusion of people with disabilities. We want to especially thank the advocates who made this possible, including Madison Lawson and Mindy Henderson, for bravely sharing their real-time travel experience to capture this moving video. This victory wouldn't have been possible without the leadership of Paul Melmeyer and the dedicated #MDA #Advocacy team, as well as our talented #Marketing and #Communications teams.?We are grateful to our partners at Strategic Elements and MikeWorldWide for their invaluable support. Your contributions have been integral to our success. Together, we're making air travel more accessible for all!

This afternoon, Muscular Dystrophy Association is hosting a Congressional briefing on the Accelerating Kids' Access to Care Act. This briefing features MDA Advocacy's Director of Access Policy Joel Cartner, Esq. and #neuromuscular community advocates. MDA family members Randy and Tracy Parlier and daughter Lily, will be joined by Matt Marks from The Leukemia & Lymphoma Society, alongside Alyce Norcross, MPH of Boston Children's Hospital. This contingent will be sharing with Congressional staff why this critical bill is essential for children living with a neuromuscular disease and their families as they navigate the challenges that come with obtaining care for their children across state lines. You can help us move this bill forward too! In just a few clicks, you can send a message to your senator and urge them to ensure that children living with a neuromuscular disease and their families can access the care they need without unnecessary delays. TAKE ACTION: ?? https://lnkd.in/gRQPrwWF?

?? We’re excited to announce our partnership with the following Bionews, Inc. communities: ALS News Today, Charcot-Marie-Tooth News, Friedreich's Ataxia News, Lambert-Eaton News, Muscular Dystrophy News Today, Myasthenia Gravis News, Pompe Disease News, and SMA News Today!? This collaboration will leverage the strengths and breadth of both organizations to provide comprehensive information, news, and resources, while amplifying the voices of people living with neuromuscular conditions. We will continue to amplify MDA’s educational resources including community programs available on-demand here: https://lnkd.in/exreAxhb Check out these communities and join us in spreading awareness! Learn more about MDA Media Partnerships: https://lnkd.in/eyaycDyw? #MediaPartnership

?? We’re Hiring! ?? ? Join MDA and partner with the International Association of Fire Fighters (IAFF) on our #FillTheBoot fundraising program. We’re looking for passionate candidates to fill 18 Account Manager roles in select locations: Alexandria, LA, Baltimore, MD, Charlotte, NC, Chicago, IL, Houston, TX, Oklahoma City, OK, Pittsburgh, PA, Portland, OR, Northern Idaho, Richmond, VA. ? We’re seeking candidates with: ?? Proven experience in fundraising, business development, relationship and account management ?? Experience with nonprofits and/or first responder services, fire department operations, district coordination, etc. ?? Strong sales skills and a willingness to travel regionally ? If this sounds like you, don’t wait—apply today: https://lnkd.in/enATqz2X ? Know someone who’s a perfect fit? Share this post or tag them below! Let’s make a difference together. #Hiring #NonprofitCareers #JobOpportunity

Each year, #MDA hosts visionary leaders in #neuromuscular disease research, care, and advocacy at the MDA Clinical & Scientific Conference. In 2025, the conference will be held March 16-19 in Dallas, Texas. This global convening of the community creates opportunities for the scientific research and clinical communities to share and learn more about groundbreaking studies and innovate through collaboration. Learn more from the MDA research team including Sharon Hesterlee, PhD, Angela Lek, PhD, Evrim Atas, PhD, and Brian Lin, PhD, in this Quest blog: https://lnkd.in/eCmA5YZa??? ?? Don't miss your chance to secure your spot! Early bird registration ends on December 31, 2024. MDA families registered with us are able to attend virtually for free, and in-person at a discounted rate while space is available.??? ?? Register today: https://lnkd.in/g9NtQfY #MDAConference

Check out this CGTLive interview for a glimpse of what’s in store for the upcoming 2025 MDA Clinical & Scientific Conference! Hear from Sharon Hesterlee, PhD, Chief Research Officer for Muscular Dystrophy Association about some exciting sessions from innovations in #MuscleRegeneration and #GeneTherapy to dedicated tracks for #ALS and underrepresented diseases like #OPMD. This year’s lineup truly captures the impact and momentum in the field of #neuromuscular disease research and care. Register ?? MDAconference.org Agenda: chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://lnkd.in/eY68rSk8 #MDAconference

This #NationalFamilyCaregiversMonth, we honor parent caregivers like Brooke Eby’s mom and dad, who have embraced a complex and evolving role. As Brooke navigates life with #ALS, her parents are right there—offering support, coordinating care, and respecting her independence. It’s no small feat to juggle being both a parent and a caregiver for an adult, but Brooke’s parents manage it with grace, humor, and, if we know Brooke, probably some good-natured teasing!? ? Parent caregivers like Brooke‘s parents are proof that even in the toughest moments, there’s always room for love—and maybe a little laughter! MDA is proud to support #caregivers by offering resources & connections. Find out more at MDA.org/caregivers?

We are proud to share that Morgan Roth, Muscular Dystrophy Association’s Chief Marketing Officer, has been named to The PR Net’s Marcomms Most Influential list!?? ? Under Morgan's leadership, MDA's marketing and communications team has reached new heights, dominating share of voice in the rare disease space and building on MDA’s seven decades of exceptional brand and its signature standards for excellence. Morgan and her award-winning team of creatives have helped to measurably advance MDA’s goals for research, policy, access to care, and connection to community. Her strategic insights and her experience as someone living with neuromuscular disease have created a lasting impact, strengthening our community.? ? Congratulations, Morgan, on this well-deserved recognition! Your commitment inspires us all and continues to power MDA’s reputation and momentum. Here’s to even greater milestones ahead! ?? See the full list here: https://lnkd.in/ewdrXzbX #Leadership #Influence #Marcomm #CommunityImpact #ThePRnetMMI?