The Speak Foundation Announces $300,000 BridgeBio Commitment to Advance Patient-Led LGMD Centers of Excellence
WASHINGTON, Oct. 1, 2026 /PRNewswire/ -- The Speak Foundation is pleased to announce a $300,000 commitment over two years from BridgeBio Pharma, Inc. to support and expand its national LGMD Centers of Excellence program, a patient-led initiative designed to strengthen specialized care, research readiness and access to emerging treatments for people living with limb-girdle muscular dystrophy.
The patient-designed Centers of Excellence are intended to replace fragmented care with coordinated, specialized care. People with LGMD often must find local specialists on their own and explain a rare condition to clinicians unfamiliar with it. At an LGMD Center of Excellence, patients can connect with clinicians experienced in neuromuscular disease who can coordinate care across specialties such as neurology, cardiology and pulmonology and provide guidance on what to monitor and avoid.
Expanding the network aims to bring expert LGMD care closer to more families and reduce geographic gaps in access, while bringing together leading LGMD clinical care around shared standards of care, patient education, research participation and collaboration.
"This investment allows us to continue building the clinical infrastructure the LGMD community needs," said Kat Knudson, Founder and CEO of The Speak Foundation. "What makes this program unique is that it is patient-led and built around the needs patients and families have identified—from better access to expert care to greater readiness for clinical trials and future treatments."
"We are proud to partner with The Speak Foundation to support a patient-led effort focused on strengthening specialized care and building greater connectivity across the LGMD community," said Doug Sproule, MD, Chief Medical Officer of BridgeBio Neuromuscular. "Programs like the LGMD Centers of Excellence can help create a stronger foundation for patients and families today while supporting the continued advancement of LGMD research and therapeutic development."
BridgeBio Neuromuscular is developing BBP-418 (ribitol), an investigational oral therapy for individuals with LGMDR9, formerly known as LGMD2I, caused by variants in the FKRP gene.
BridgeBio's two-year commitment will help strengthen and expand the LGMD Centers of Excellence network and support resources aimed at improving the patient experience and advancing the future of LGMD care.
About Speak Foundation
The Speak Foundation is a patient-led nonprofit advancing care, research, advocacy and innovation for people living with limb-girdle muscular dystrophy (LGMD) and other neuromuscular rare diseases. Founded in 2008 as the first patient-led nonprofit dedicated to all forms of LGMD, the organization brings authentic lived experience to efforts to improve care, research, drug development and policy. It brings patients and families together with clinicians, researchers, industry and policymakers to expand access to expert care, strengthen drug development and ensure patients help shape the decisions that affect their lives. Through initiatives including the LGMD Centers of Excellence, Speak Foundation is building patient-designed solutions that can serve as a model for the broader rare-disease community.
SOURCE The Speak Foundation
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