CURE SMA

Health Issues

Research into spinal muscular atrophy, timely access to care, treatments, medical devices, and home and community-based services, Give Kids a Chance Act (H.R.1261/ S.932- FDA Pediatric Priority Review Voucher Program), H.R. 1, DOD Peer-Reviewed Medical Research Program, Labor-Health and Human Services, and Education Appropriations bill, Family Caregiver Awareness, Resources, and Education (CARE) Partnerships Act, Pediatric Palliative Care Homes, Advisory Committee on Heritable Disorders in Newborns and Children, National Institute on Disability, Independent Living, and Rehabilitation Research funding, 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 funding; Medicaid home and community-based services, Public Law 119-21 Medicaid Community Engagement Requirements - disability and medically frail definition

TargetedSENATE · HOUSE OF REPRESENTATIVES · 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)

Budget/Appropriations

2025 Budget Resolution, National Institutes of Health research into spinal muscular atrophy, U.S. Department of Defense Peer-Reviewed Medical Research in spinal muscular atrophy, Medicaid home and community-based services, housing (Sec. 811 Housing for People with Disabilities & Mainstream Housing Choice Vouchers), Defense Health Research Programs (Congressionally Directed Medical Research Programs), National Institute on Disability, Independent Living, and Rehabilitation Research funding, Labor-HHS-Education Appropriations bill, Transportation-HUD Appropriations bill, Defense Appropriations bill, Department of Education Office of Special Education and Rehabilitative Services staffing, Congressionally Directed Medical Research Program funding