CURE SMA for CURE SMA
What was lobbied
12 issue areas, each in the filer's own words, with who lobbied on it and where.
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; Medicaid home and community-based services, Public Law 119-21 Medicaid Community Engagement Requirements - disability and medically frail definition
| Lobbyist | Covered position, as disclosed |
|---|---|
| SARAH BELLISH | — |
| MAYNARD FRIESZ | — |
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, Department of Education Office of Special Education and Rehabilitative Services staffing, Congressionally Directed Medical Research Program funding
| Lobbyist | Covered position, as disclosed |
|---|---|
| SARAH BELLISH | — |
| MAYNARD FRIESZ | — |
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, Department of Education Office of Special Education and Rehabilitative Services staffing and enforcement, Public Law 119-21 Medicaid Community Engagement Requirements - disability and medically frail definition
| Lobbyist | Covered position, as disclosed |
|---|---|
| SARAH BELLISH | — |
| MAYNARD FRIESZ | — |
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, "Ensuring Safe Accommodations for Air Travelers with Disabilities Using Wheelchairs Rule II, Transportation-HUD Appropriations bill
| Lobbyist | Covered position, as disclosed |
|---|---|
| SARAH BELLISH | — |
| MAYNARD FRIESZ | — |
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)
| Lobbyist | Covered position, as disclosed |
|---|---|
| SARAH BELLISH | — |
| MAYNARD FRIESZ | — |
Housing HOU
Transportation-HUD Appropriations bill, housing for people with disabilities (Sec. 811 Housing for People with Disabilities & Mainstream Housing Choice Vouchers)
| Lobbyist | Covered position, as disclosed |
|---|---|
| SARAH BELLISH | — |
| MAYNARD FRIESZ | — |
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, U.S. Department of Defense Congressionally Directed Medical Research Program, Medical Research for Our Troops Act (H.R. 3906)
| Lobbyist | Covered position, as disclosed |
|---|---|
| SARAH BELLISH | — |
| MAYNARD FRIESZ | — |
Medicare/Medicaid MMM
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 119-21Medicaid Community Engagement Requirements
| Lobbyist | Covered position, as disclosed |
|---|---|
| SARAH BELLISH | — |
| MAYNARD FRIESZ | — |
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
| Lobbyist | Covered position, as disclosed |
|---|---|
| SARAH BELLISH | — |
| MAYNARD FRIESZ | — |
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, Automated Vehicle (AV) Deployment and Research, Transportation-HUD Appropriations bill
| Lobbyist | Covered position, as disclosed |
|---|---|
| SARAH BELLISH | — |
| MAYNARD FRIESZ | — |
Education EDU
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
| Lobbyist | Covered position, as disclosed |
|---|---|
| SARAH BELLISH | — |
| MAYNARD FRIESZ | — |
Disaster Planning/Emergencies DIS
Disaster Relief Medicaid Act (H.R.3990/ S.2071), disaster planning and readiness assistance for individuals with disabilities
| Lobbyist | Covered position, as disclosed |
|---|---|
| SARAH BELLISH | — |
| MAYNARD FRIESZ | — |
Shown as published by the Senate Office of Public Records and the House Clerk under the Lobbying Disclosure Act. The official filing is the record; open it for the full form.