CURE SMA for CURE SMA

Health Issues HCR

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 Wheelchairs, Coverage of Respiratory Assist Devices (RADs) and Home Mechanical Ventilators (HMVs), FDA Rare Disease Patient Listening Session, National Institutes of Health funding

Contacted: Health & Human Services, Dept of (HHS); Centers For Medicare and Medicaid Services (CMS); Defense, Dept of (DOD); Natl Institutes of Health (NIH); Food & Drug Administration (FDA); HOUSE OF REPRESENTATIVES; SENATE

Bills named: H.R. 1 (119th), S. 932 (119th), H.R. 1261 (119th)

Budget/Appropriations BUD

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

Contacted: Defense, Dept of (DOD); Health & Human Services, Dept of (HHS); Housing & Urban Development, Dept of (HUD); Natl Institutes of Health (NIH); Transportation, Dept of (DOT); Centers For Medicare and Medicaid Services (CMS); HOUSE OF REPRESENTATIVES; SENATE

Civil Rights/Civil Liberties CIV

Supplemental Security Income Savings Penalty Elimination Act (H.R.2540/ S.1234), disability marriage penalty, home and community-based services, Individuals with Disabilities Act (P.L. 101-336), ENABLE Act (H.R.1436/S.627), Coverage of Standing Systems in Power Wheelchairs, Adult Changing Tables at U.S. Capitol

Contacted: SENATE; Health & Human Services, Dept of (HHS); HOUSE OF REPRESENTATIVES

Bills named: S. 1234 (119th), H.R. 1436 (119th), H.R. 2540 (119th), S. 627 (119th)

Aviation/Airlines/Airports AVI

FAA Reauthorization Act of 2024 (P.L. 118-63); Air Carrier Access Act (P.L. 99-435), Ensuring Safe Accommodations for Air Travelers with Disabilities Using Wheelchairs Final Rule, Transportation-HUD Appropriations bill

Contacted: HOUSE OF REPRESENTATIVES; Transportation, Dept of (DOT); SENATE

Defense DEF

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

Contacted: Defense, Dept of (DOD); HOUSE OF REPRESENTATIVES; SENATE

Bills named: H.R. 3906 (119th)

Housing HOU

Transportation-HUD Appropriations bill, housing for people with disabilities (Sec. 811 Housing for People with Disabilities & Mainstream Housing Choice Vouchers)

Contacted: SENATE; Housing & Urban Development, Dept of (HUD); HOUSE OF REPRESENTATIVES

Medical/Disease Research/Clinical Labs MED

medical research in spinal muscular atrophy, National Institutes of Health funding, U.S. Department of Defense peer reviewed research in spinal muscular atrophy, Medical Research for Our Troops Act (H.R. 3906)

Contacted: Natl Institutes of Health (NIH); HOUSE OF REPRESENTATIVES; Defense, Dept of (DOD); SENATE

Bills named: H.R. 3906 (119th)

Medicare/Medicaid MMM

Medicaid home and community-based services, Medicaid funding, 2025 Budget Resolution, durable medical equipment, Pediatric Palliative Care Homes, H.R. 1, Think Differently Database Act (P.L. 118-225), Labor-HHS-Education Appropriations bill

Contacted: SENATE; Centers For Medicare and Medicaid Services (CMS); HOUSE OF REPRESENTATIVES; Health & Human Services, Dept of (HHS)

Bills named: H.R. 1 (119th)

Taxation/Internal Revenue Code TAX

ENABLE Act (H.R.1436/ S.627), Mobility Means Freedom Act (H.R.2320), Achieving a Better Life Experience (ABLE) Act (P.L. 113-295), H.R. 1

Contacted: HOUSE OF REPRESENTATIVES; SENATE

Bills named: H.R. 1 (119th), H.R. 2320 (119th), H.R. 1436 (119th), S. 627 (119th)

Transportation TRA

FAA Reauthorization Act of 2024 (P.L. 118-63); Air Carrier Access Act (P.L. 99-435), Ensuring Safe Accommodations for Air Travelers with Disabilities Using Wheelchairs Final Rule, Disability Access to Transportation Act, accessibility in community transportation, Transportation-HUD Appropriations bill

Contacted: SENATE; HOUSE OF REPRESENTATIVES; Transportation, Dept of (DOT)