CURE SMA

Health Issues

Research into spinal muscular atrophy, timely access to care, treatments, medical devices, and home and community-based services, Medicaid home care (paid family caregiving & self-directed care), Give Kids a Chance Act (H.R.1261/ S.932- FDA Pediatric Priority Review Voucher Program), DOD Congressionally Directed Medical Research Program & Peer-Reviewed Medical Research Program, Local Coverage Determination related to seat elevation in Group 2 standard power wheelchairs, Labor-Health and Human Services, and Education Appropriations bill, Family Caregiver Awareness, Resources, and Education (CARE) Partnerships Act, Pediatric Palliative Care Homes, National Institute on Disability, Independent Living, and Rehabilitation Research funding, Seat Elevation in Group 2 Non-Complex Power Wheelchairs, Coverage of Standing Systems in Group 3 Power Wheelchair, Competitive Bidding for Tracheostomy, Ostomy and Urological Supplies; FDA Rare Disease Patient Listening Session, Coverage of Respiratory Assist Devices (RADs) and Home Mechanical Ventilators (HMVs), Accelerating Kids Access to Care Act (H.R. 1509/S. 752, National Institutes of Health grant management process & funding; Medicaid home and community-based services, Public Law 119-21 Medicaid Community Engagement Requirements - disability and medically frail definition; Ensuring Patient Access to Critical Breakthrough Products Act (H.R. 5343), Veterans STAND Act (H.R. 6835), Veterans SPORTS Act (S. 3138) Consolidated Appropriations Act of 2026 (P.L. 119-75)

TargetedSENATE · HOUSE OF REPRESENTATIVES · Office of Management & Budget (OMB) · Defense, Dept of (DOD) · Health & Human Services, Dept of (HHS) · Food & Drug Administration (FDA) · Centers For Medicare and Medicaid Services (CMS) · Natl Institutes of Health (NIH)

Defense

U.S. Department of Defense Peer-Reviewed Medical Research Program Research in Spinal Muscular Atrophy, Funding for Defense Health Research Programs (Congressionally Directed Medical Research Programs and Peer Reviewed Medical Research Program), Medical Research for Our Troops Act (H.R. 3906)