New York, Nov. 03, 2025 (GLOBE NEWSWIRE) -- This November, the Muscular Dystrophy Association (MDA) is honoring family caregivers who provide essential support for people living with muscular dystrophy, ALS, and more than 300 related neuromuscular diseases. Throughout the month, MDA will share stories of connection and advocacy that highlight the critical role caregivers play in the lives of the loved ones they support. The organization is also leading efforts on Capitol Hill to advance policies that strengthen caregiver resources and protect access to quality care. Families seeking information and guidance may contact the MDA Resource Center specialists for personalized support and access to care. Donations to support MDA’s mission including resources and community connections for caregivers may be made here.
“Family caregivers are an essential part of everything we do here at the Muscular Dystrophy Association,” said Sharon Hesterlee, PhD, interim President and CEO of MDA. “From advancing groundbreaking research to ensuring access to high-quality care and advocating for stronger support systems, their dedication makes it possible for people living with neuromuscular conditions to live empowered lives. This month, and every month, we recognize their compassion, resilience, and the vital role they play in the strength of the families we serve.”
Honoring the Heart of Every Family
Throughout November, the Muscular Dystrophy Association (MDA) is sharing stories that reflect the love, commitment, and connection at the center of every caregiving experience.
- From Los Angeles, California, celebrity hairstylist and MDA supporter Ken Paves honors his mother, Helen, who passed away from amyotrophic lateral sclerosis (ALS). In his heartfelt message, Paves reflects on the lessons of compassion, strength, and service his mother instilled in him, and how her legacy continues to inspire his advocacy for hundreds of thousands of MDA families.
- Outside of St. Louis, Missouri, Sydney Knobel-Graves and Kody Graves, whose daughter Kenzie lives with spinal muscular atrophy (SMA), describe how, after her diagnosis, they found care and guidance through MDA that reminded them they were never alone.
- From Corpus Christie, Texas, Jenn Mirabal, an MDA staff member and mother of a child living with Duchenne muscular dystrophy (DMD), shares how her lifelong commitment to MDA embodies the power of community and giving back.
- In Southlake, Texas, MDA family member Matt Swinton, who lives with SMA, describes caregiving in one word – sacrifice – and shares an impactful advocacy story from his family’s journey.
- From Durham, North Carolina, a research feature with Dr. Robert Califf, former FDA Commissioner, explores how artificial intelligence (AI) is transforming care experiences for families affected by neuromuscular diseases.
- Across the country, influential voices and creators with deep connections to MDA are using their platforms to celebrate caregivers and raise awareness around inclusion and access. Actor Max Adler, from Los Angeles, California who lost his mother and grandmother to facioscapulohumeral muscular dystrophy (FSHD), shares messages of remembrance and gratitude to honor caregivers in his family and beyond. Actor, comedian, and advocate Steve Way from Rutherford, New Jersey, who lives with Ullrich congenital muscular dystrophy, spotlights the urgent need for accessible caregiving support and disability inclusion. Comedian and advocate Justin Tietjen, Las Vegas, Nevada, who lives with muscular dystrophy, highlights how MDA’s community empowers individuals and families to thrive together.
- On National Philanthropy Day (November 15), MDA will also amplify a special social media series showcasing meaningful ways to give back—beyond donations—to support the neuromuscular disease community.
Additional Events and Resources
Throughout November, MDA will host fundraising events and community support groups. View the full event calendar here. Families seeking information and guidance may contact the MDA Resource Center specialists for personalized support and access to care.
Join the Movement
Follow @MDAorg on social media throughout November as the organization honors caregivers, hear their stories, and take action in support of the community using #NationalFamilyCaregiverMonth #ForwardTogether #MDA75.
Media contact press@mdausa.org.
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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 over 300 other neuromuscular conditions. For 75 years, MDA has led the way in accelerating research, advancing care, and advocating support and inclusion of families living with neuromuscular disease. 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, Bluesky, TikTok, LinkedIn, and YouTube.
About Muscular Dystrophy Association’s 75th Anniversary
In 2025, the Muscular Dystrophy Association proudly marks 75 years of legacy, impact, and momentum in the fight against neuromuscular diseases. Since our founding, MDA has been at the forefront of research breakthroughs, providing access to comprehensive care, and championing the rights of people living with muscular dystrophy, ALS, and over 300 other neuromuscular diseases. This milestone has been made possible by generations of dedicated support from people living with neuromuscular disease, their families, researchers, clinicians, volunteers, and donors—who boldly drive our mission forward. As we look ahead, we remain committed to honoring this legacy, building on the impact we’ve made together, and continuing our momentum toward transformative progress for people living with neuromuscular disorders. Learn more at MDA75.org.
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Mary Fiance, National Vice President, Strategic Communications Muscular Dystrophy Association press@mdausa.org
