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Muscular Dystrophy Association Announces $100,000 Investment to Advance LGMD Care at Leading MDA Care Centers with BridgeBio
Funding through MDA Care Advance Grant program supports Stanford Health Care and the University of Minnesota
New York, May 12, 2026 (GLOBE NEWSWIRE) -- The Muscular Dystrophy Association (MDA) today announced a $100,000 investment by BridgeBio to strengthen multidisciplinary care for people living with limb-girdle muscular dystrophy (LGMD). Through the MDA Care Advance Grant program, awards will support initiatives at Stanford Health Care and the Regents of the University of Minnesota aimed at improving care coordination, expanding access to care, and advancing hybrid models of neuromuscular care for people living with LGMD across the MDA Care Center Network.
“These grants are about improving care outcomes for the LGMD community that can be leveraged across leading MDA Care Centers,” said Nora Capocci, Executive Vice President, Healthcare Services, MDA. “The Network is uniquely positioned to implement innovations that improve how multidisciplinary care is delivered in real clinical settings.”
Supported by BridgeBio and administered in collaboration with MDA, the LGMD Grants are part of MDA’s Care Advancement Grant program is designed to accelerate innovation within established MDA Care Centers by supporting projects that enhance integrated care delivery, improve continuity across specialties, and develop scalable approaches to long-term disease management for people living with neuromuscular conditions.
“We are proud to partner with the Muscular Dystrophy Association to support practical innovations that strengthen how care is delivered for people living with LGMD,” said Doug Sproule, MD, Chief Medical Officer, BridgeBio Neuromuscular. “LGMD is not a single disease – it’s a group of conditions that require coordinated, lifelong care that evolves with each person’s needs, especially depending on subtype. By supporting innovations at leading care centers, we aim to help make multidisciplinary care more accessible, more connected, and better equipped to best support individuals with this type of serious and progressive condition.”
University of Minnesota
Led by Peter B. Kang, MD and Peter Karachunski, M.D., the University of Minnesota project will evaluate and validate remote versus in-person clinical outcome measures to support hybrid care and clinical trial models in LGMD. The initiative is designed to reduce barriers to access, improve long-term monitoring and establish standardized approaches for remote assessment. It will also develop a scalable framework for decentralized data collection to support broader clinical trial participation and continuity of care.
“This grant enables us to directly compare remote and in-person assessments in a way that reflects how patients are actually followed over time,” said Peter Kang, M.D., MDA Co-Care Center Director at the University of Minnesota. “Our goal is to maintain the highest standards of clinical rigor while making care more accessible, so patients can stay connected to consistent monitoring regardless of distance or disease progression.”
Stanford Health Care
Led by John Day, M.D., Ph.D., Stanford Health Care will conduct a comprehensive evaluation of LGMD care delivery, including patient retention, transitions in care, access barriers, insurance challenges, and follow-up gaps. Using electronic medical record data combined with patient and stakeholder insights, the team will identify opportunities to strengthen care coordination and develop a long-term sustainability framework. The project also expands education for patients and providers, including Continuing Medical Education (CME) programming and multi-stakeholder collaboration, while strengthening readiness for future therapies.
Strengthening the future of neuromuscular care
“Multidisciplinary care is essential in neuromuscular disease because it brings together the full range of expertise a patient needs into one coordinated system,” said Barry Byrne, M.D., Ph.D., Chief Medical Advisor, MDA. “When that system functions well, patients benefit from earlier intervention, more consistent monitoring, and improved readiness for emerging therapies. This investment strengthens that model where it matters most—within the care centers delivering it every day.”
“I have been receiving care at Stanford’s multidisciplinary MDA Care Center for LGMD for the past 12 years and continue to do so. Throughout this time, the team has been compassionate, attentive, and dedicated to ensuring all of my needs are met,” said Samaher Abuzahriyeh, MDA Ambassador. “I especially value the clinic’s coordinated approach, where I’m able to see OT, PT, and respiratory therapy during the same visit, which makes my care much more efficient and seamless. I would like to give a special thanks to Dr. John Day for his kindness and easygoing nature during visits, and to respiratory therapist Rich Barajas for his encouragement and support during the respiratory test,” said Abuzahriyeh.
Together, MDA and BridgeBio are advancing a shared commitment to improving outcomes for people living with neuromuscular disease through strengthened care delivery, opportunities for care, and integration of research across the MDA Care Center Network.
About the MDA Care Center Network
The Muscular Dystrophy Association (MDA) Care Center Network was established in 1953 with the opening of the first specialized clinics at NYU Langone Health and the University of Rochester Medical Center, laying the foundation for what is now the nation’s largest multidisciplinary neuromuscular care network. Today, the Network includes more than 150 leading medical institutions across the United States, delivering coordinated, multidisciplinary care through more than 120,000 patient visits annually and serving an estimated 70,000 individuals with neuromuscular disease. MDA’s broader mission supports more than 300,000 people living with over 300 neuromuscular diseases, including muscular dystrophy, ALS, and related conditions.
MDA Care Centers are designated based on rigorous criteria, requiring a specialized multidisciplinary team—led by a physician director and supported by a clinical coordinator, physical therapist, and social worker—along with a dedicated clinic structure and adherence to MDA’s standards of comprehensive care. At each center, neurologists, care coordinators, social workers, and allied health professionals collaborate to deliver integrated diagnosis, treatment, and long-term care. MDA specialists also help families navigate care, coordinate services, and access critical resources. Care Centers improve access, continuity, and outcomes across the lifespan and serve as hubs for research and innovation. The Network also provides a key entry point for clinical trials, expanding access to emerging therapies and improving quality of life.
For more information about MDA’s Care Center Network and research initiatives, and advocacy, visit MDA.org. Ongoing support for families and medical professionals, contact the MDA Resource Center by phone 1-833-ASK-MDA1 (1-833-275-6321) or email ResourceCenter@mdausa.org.
Media contact press@mdausa.org.
About Muscular Dystrophy Association
Muscular Dystrophy Association (MDA) has been at the center of progress for people living with muscular dystrophy, ALS, and over 300 other neuromuscular conditions for 75 years. We unite researchers, clinicians, advocates, and families to speed the pace of discovery, improve access to expert care, and ensure inclusion in every aspect of life. Our mission is simple: give the people we serve the tools and opportunities to live longer, more independent lives. To learn more visit mda.org. Follow MDA on social media on Instagram, Facebook, X, Threads, Bluesky, TikTok, LinkedIn, and YouTube.
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Mary Fiance, National Vice President, Strategic Communications Muscular Dystrophy Association press@mdausa.org
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