Skip to main content
All lobbying filings

CURE SMA

Lobbying for CURE SMA

 Filing 2nd Quarter - Report
2nd Quarter (Apr 1 - June 30) 2026 · Illinois · House · Senate · $75,000.00 expenses · posted Jul 10, 2026

Official filing document

 Bills named in this filing 22
 Lobbying activity 13
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)

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)

Housing

Transportation-HUD Appropriations bill, housing for people with disabilities (Sec. 811 Housing for People with Disabilities, Mainstream Housing Choice Vouchers, & Emergency Housing Vouchers), funding for disability and aging programs

Medical/Disease Research/Clinical Labs

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

Education

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

Disaster Planning/Emergencies

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

Energy/Nuclear

Maintain Puerto Rico Energy Resilience Fund grants for residents with SMA

Budget/Appropriations

National Institutes of Health research into spinal muscular atrophy, U.S. Department of Defense Peer-Reviewed Medical Research in spinal muscular atrophy, Congressionally Directed Medical Research Program funding, 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, Consolidated Appropriations Act of 2026 (P.L. 119-75), Assistive Technology Act program funding, Access Board funding

Civil Rights/Civil Liberties

Supplemental Security Income Savings Penalty Elimination Act (H.R.2540/ S.1234), SSI Restoration Act, 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), Seat Elevation in Group 2 Non-Complex Power Wheelchairs, Coverage of Standing Systems in Power Wheelchairs, Adult Changing Tables at U.S. Capitol, Department of Education Office of Special Education and Rehabilitative Services staffing and enforcement, Public Law 119-21 Implementation, including disability and medically frail definition for Medicaid Community Engagement Requirement; Veterans STAND Act (H.R. 6835), Veterans SPORTS Act (S. 3138), ABLE Tomorrow Act, the ABLE MATCH Act, and the ABLE Direct Deposit Act

Aviation/Airlines/Airports

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, "Ensuring Safe Accommodations for Air Travelers with Disabilities Using Wheelchairs Rule II, Transportation-HUD Appropriations bill, disability-related air travel complaints & aviation consumer protections

Medicare/Medicaid

Medicaid home and community-based services, Medicaid caregiving 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, Public Law 119-21 Implementation, including disability and medically frail definition for Medicaid Community Engagement Requirement; 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, Local Coverage Determination related to seat elevation in Group 2 standard power wheelchairs,

Taxation/Internal Revenue Code

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, ABLE Tomorrow Act, the ABLE MATCH Act, and the ABLE Direct Deposit Act

Transportation

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, Automated Vehicle (AV) Deployment and Research, Transportation-HUD Appropriations bill, surface transportation reauthorization, BUILD America 250 Act (H.R. 8870), automated driving system-equipped vehicle federal safety standards

Source: federal Lobbying Disclosure Act filing. Bills are parsed from the activity descriptions.

Report a problem