LGMD Advocates Press Congress for Rare-Disease Research Funding
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Washington, D.C. – – September 18, 2026 -- Advocates for limb-girdle muscular dystrophy (LGMD) held more than 60 meetings with congressional offices this week, representing patients from over 20 states, as part of The Speak Foundation's LGMD Day on the Hill.
No FDA-approved treatment exists for LGMD despite scientific progress
LGMD is a group of rare genetic diseases causing progressive muscle weakness, and no FDA-approved treatment currently targets the condition. Advocates urged lawmakers to increase federal investment in LGMD research, expand access to Department of Defense research funding, and push for clearer, more consistent regulatory pathways for rare-disease treatments.