MDA taps Bridgebio funding to improve LGMD care coordination
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Bridgebio is providing $100,000 to the Muscular Dystrophy Association (MDA) to advance projects aimed at improving multidisciplinary care for people with limb-girdle muscular dystrophy (LGMD).
The awards will go to initiatives at Stanford Health Care and the University of Minnesota that aim to make LGMD care more coordinated, accessible, and flexible for patients across the MDA Care Center Network.
“The Network is uniquely positioned to implement innovations that improve how multidisciplinary care is delivered in real clinical settings,” Nora Capocci, MDA’s executive vice president of healthcare services, said in an association press release.
LGMD is a group of rare genetic disorders that cause progressive weakness in muscles around the hips and shoulders. Age at onset and rate of progression can vary widely across disease subtypes.
As the disease progresses, people with LGMD may need physical or occupational therapy, as well as other forms of support for everyday activities. That often requires a coordinated team, including neuromuscular specialists, physical therapists, social workers, and care coordinators.
Program bridges specialties for long-term disease management
“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 of Bridgebio Neuromuscular. Bridgebio is working to have its experimental oral therapy, BBP-418, approved in the U.S. to treat LGMD type 2i.
“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,” Sproule said. “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.”
The awards will support initiatives under the MDA Care Advancement Grant program, which aims to enhance care by bridging specialties and improving long-term management of neuromuscular diseases.
One project, led by University of Minnesota neurologists Peter B. Kang, MD, and Peter Karachunski, MD, will explore in-person and remote clinical outcome measures for LGMD patients to support hybrid trial models that reduce barriers to access and improve long-term monitoring.
“This grant enables us to directly compare remote and in-person assessments in a way that reflects how patients are actually followed over time,” Kang said. “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.”
At Stanford Health Care, neurology professor John Day, MD, PhD, will lead a comprehensive evaluation of LGMD care delivery. The project will examine factors that can disrupt care, including missed follow-up appointments, transitions in care, and insurance-related obstacles. Using electronic medical records along with patient and stakeholder input, the team will identify ways to improve care coordination and make those improvements sustainable over time.
The Stanford project will also expand education for patients and healthcare providers.
“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, MD, PhD, chief medical advisor to the 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.”
The MDA Care Center Network, founded in 1953, spans more than 150 medical institutions in the U.S. Its centers host more than 120,000 patient visits each year and serve about 70,000 people with neuromuscular conditions. They can also help connect patients with access to research and opportunities to participate in clinical trials.
Centers are designated based on requirements such as a dedicated clinic structure, a specialized multidisciplinary team, and care that meets MDA’s standards.
Samaher Abuzahriyeh, an MDA ambassador, has been receiving care at the Stanford center for 12 years.
“Throughout this time, the team has been compassionate, attentive, and dedicated to ensuring all of my needs are met,” Abuzahriyeh said. “I especially value the clinic’s coordinated approach, where I’m able to see [occupational therapy, physical therapy], and respiratory therapy during the same visit, which makes my care much more efficient and seamless.”
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