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 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

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

Bills named: S. 752 (119th), H.R. 1261 (119th), S. 932 (119th), H.R. 1 (119th), H.R. 1509 (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: Centers For Medicare and Medicaid Services (CMS); HOUSE OF REPRESENTATIVES; Natl Institutes of Health (NIH); Housing & Urban Development, Dept of (HUD); SENATE; Defense, Dept of (DOD); Transportation, Dept of (DOT); Health & Human Services, Dept of (HHS)

Civil Rights/Civil Liberties CIV

Supplemental Security Income Savings Penalty Elimination Act (H.R.2540/ S.1234), disability marriage penalty, Marriage Equality for Disabled Adults Act (H.R. 1389), Eliminating the Marriage Penalty in SSI Act (H.R. 320/ S.73), 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; HOUSE OF REPRESENTATIVES; Health & Human Services, Dept of (HHS)

Bills named: H.R. 320 (119th), H.R. 2540 (119th), H.R. 1436 (119th), S. 1234 (119th), S. 73 (119th), S. 627 (119th), H.R. 1389 (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: SENATE; HOUSE OF REPRESENTATIVES; Defense, Dept of (DOD)

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

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

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

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), S. 627 (119th), H.R. 1436 (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: Transportation, Dept of (DOT); HOUSE OF REPRESENTATIVES; SENATE

Education EDU

Labor, Health and Human Services, and Education Appropriations bill; IDEA Full Funding Act (H.R.2598/ S.1277), IDEA enforcement and oversight

Contacted: HOUSE OF REPRESENTATIVES; Education, Dept of; SENATE

Bills named: S. 1277 (119th), H.R. 2598 (119th)

Disaster Planning/Emergencies DIS

Disaster Relief Medicaid Act (H.R.3990/ S.2071), disaster planning and readiness assistance for individuals with disabilities

Contacted: Homeland Security, Dept of (DHS); HOUSE OF REPRESENTATIVES; SENATE; Federal Emergency Management Agency (FEMA)

Bills named: S. 2071 (119th), H.R. 3990 (119th)