0846b929-b410-4c21-8a27-643c3f7c8804Q1 — 1st Quarter - ReportMUSCULAR DYSTROPHY ASSOCIATION, INC.
Patient advocacy and services for the neuromuscular disease community.
MUSCULAR DYSTROPHY ASSOCIATION, INC.
HOU — HousingSent MDA Comments to U.S. Department of Housing and Urban Development on Implementation of the Fair Housing Acts Disparate Impact Standard Proposed Rule
Government entities lobbied: HOUSE OF REPRESENTATIVES; Housing & Urban Development, Dept of (HUD); SENATE
VET — VeteransJoined Coalition Comments to House Veterans Affairs Committee, Subcommittee on Oversight and Investigations Re: Opposition to Discussion Draft of Veterans Care Protection Act
Government entities lobbied: HOUSE OF REPRESENTATIVES; SENATE; Veterans Affairs, Dept of (VA)
HCR — Health IssuesSent MDA Comments to House Oversight and Investigations Subcommittee on Hearing on Fraud in Medicaid Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) on HHS Notice of Benefit and Payment Parameters for 2027 Proposed Rule Coalition Comments to Congressional Appropriations Leaders Re: FY2027 Support for National Institutes of Health (NIH) Joined Coalition Comments to Congress Urging Support for the Lowering Costs for Caregivers Act (3.10.2026) Joined Coalition Comments to U.S. Senate Leadership in Support of the Give Kids a Chance Act Joined Coalition Comments from Partnership to Protect Coverage (PPC) to House Ways and Means Committee re: Full Committee Hearing with Health Insurance CEOs Joined Coalition Comments from Partnership to Protect Coverage (PPC) to House Energy and Commerce Committee on Lowering Health Care Costs for All Americans: An Examination of Health Insurance Affordability Hearing Sent MDA Comments to U.S. Department of Health and Human Services (HHS) on Proposed Rule Nondiscrimination on the Basis of Disability in Programs or Activities Receiving Federal Financial Assistance Joined Coalition Comments from Patient Advocacy Organizations Urging the U.S. Senate to Extend ACA Tax Credits Advocated for the introduction and passage of the ACT for ALS Advocated for the passage of the Alleviating Barriers to Caregiving Act Supported the Accelerating Kids' Access to Care Act Supported Pharmacy Benefit Manager (PBM) Reform Patient Priorities Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act Supported the introduction of legislation that would better facilitate wheelchair repair Supported legislation that increases access to home and community-based services Supported the HEARD Act Advocated for the passage of the Newborn Screening Saves Lives Act
Government entities lobbied: Centers For Disease Control & Prevention (CDC); Centers For Medicare and Medicaid Services (CMS); Defense, Dept of (DOD); Food & Drug Administration (FDA); Health & Human Services, Dept of (HHS); Health Resources & Services Administration (HRSA); HOUSE OF REPRESENTATIVES; Natl Institutes of Health (NIH); SENATE
AVI — Aviation/Airlines/AirportsEncouraged Congress to maintain its oversight of the implementation of the FAA Reauthorization Act of 2024. Joined Coalition Comments to U.S. Department of Transportation on Proposed Guidance on Investigatory and Enforcement Policies and Procedures Filed MDA Comments to U.S. Department of Transportation on Proposed Guidance on Investigatory and Enforcement Policies and Procedures Joined Coalition Comments to U.S. Department of Transportation on Disability Complaint Reporting Requirements Filed MDA Comments to U.S. Department of Transportation on Disability Complaint Reporting Requirements
Government entities lobbied: Federal Aviation Administration (FAA); HOUSE OF REPRESENTATIVES; SENATE; Transportation, Dept of (DOT); U.S. Architectural & Transportation Barriers Compliance Board (ACCESS)
BUD — Budget/AppropriationsSupported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported robust appropriations for the NIH, CDC, FDA, and other critical agencies for our community Coalition Comments to Congressional Appropriations Leaders Re: FY2027 Support for National Institutes of Health (NIH) Joined Coalition Comments to FY2027 House Labor, Health and Human Services, and Education Appropriations Subcommittee for the Assistive Technology (AT) Act Joined Coalition Comments to FY2027 Senate Subcommittee on Transportation, Housing, Urban Development, and Related Agencies Appropriations for the U.S. Access Board Joined Coalition Comments to Congressional Appropriations Leaders Re: FY2027 Support for ALS Programs Joined Coalition Comments to the House Appropriations Subcommittee on Labor, HHS, and Education Request for the National Institutes of Health (NIH) for Fiscal Year (FY) 2027 Sent MDA Comments to U.S. House of Representatives Leadership in Support of H.R. 7148, Consolidated Appropriations Act of 2026 Sent Coalition Comments to Congressional Leadership re: NIH FY26 Appropriations
Government entities lobbied: Centers For Disease Control & Prevention (CDC); Defense, Dept of (DOD); Education, Dept of; Food & Drug Administration (FDA); Health & Human Services, Dept of (HHS); Health Resources & Services Administration (HRSA); HOUSE OF REPRESENTATIVES; Natl Institutes of Health (NIH); SENATE; U.S. Architectural & Transportation Barriers Compliance Board (ACCESS); Veterans Affairs, Dept of (VA)
MED — Medical/Disease Research/Clinical LabsExpressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Joined Coalition Comments to Congressional Appropriations Leaders Re: FY2027 Support for National Institutes of Health (NIH) Joined Coalition Comments to Congressional Appropriations Leaders Re: FY2027 Support for ALS Programs Joined Coalition Comments to the House Appropriations Subcommittee on Labor, HHS, and Education Request for the National Institutes of Health (NIH) for Fiscal Year (FY) 2027 Advocated for the introduction and passage of the ACT for ALS
Government entities lobbied: Centers For Disease Control & Prevention (CDC); Centers For Medicare and Medicaid Services (CMS); Defense, Dept of (DOD); Food & Drug Administration (FDA); Health & Human Services, Dept of (HHS); Health Resources & Services Administration (HRSA); HOUSE OF REPRESENTATIVES; Natl Institutes of Health (NIH); SENATE
MMM — Medicare/MedicaidSupported the Accelerating Kids' Access to Care Act Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act Supported the reintroduction of the ALS Better Care Act Supported the reintroduction of the Access to Genetic Counseling Services Act Sent MDA Comments to House Oversight and Investigations Subcommittee on Hearing on Fraud in Medicaid Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) on HHS Notice of Benefit and Payment Parameters for 2027 Proposed Rule Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) on H.R. 1 HCBS Waiver Supported the Alleviating Barriers to Caregiving Act
Government entities lobbied: Centers For Medicare and Medicaid Services (CMS); Health & Human Services, Dept of (HHS); HOUSE OF REPRESENTATIVES; SENATE; Social Security Administration (SSA)
INS — InsuranceSupported the Accelerating Kids' Access to Care Act Supported the reintroduction of the Patient Access Act Joined Coalition Comments from Partnership to Protect Coverage (PPC) to House Ways and Means Committee re: Full Committee Hearing with Health Insurance CEOs Joined Coalition Comments from Partnership to Protect Coverage (PPC) to House Energy and Commerce Committee on Lowering Health Care Costs for All Americans: An Examination of Health Insurance Affordability Hearing Joined Coalition Comments from Patient Advocacy Organizations Urging the U.S. Senate to Extend ACA Tax Credits
Government entities lobbied: Centers For Medicare and Medicaid Services (CMS); Health & Human Services, Dept of (HHS); HOUSE OF REPRESENTATIVES; SENATE
TRA — TransportationJoined Coalition Comments to FY2027 Senate Subcommittee on Transportation, Housing, Urban Development, and Related Agencies Appropriations for the U.S. Access Board Joined Coalition Comments to House Energy and Commerce Committee on Subcommittee AV and Motor Vehicle Markup Joined Coalition Comments to U.S. Department of Transportation on Proposed Guidance on Investigatory and Enforcement Policies and Procedures Filed MDA Comments to U.S. Department of Transportation on Proposed Guidance on Investigatory and Enforcement Policies and Procedures Joined Coalition Comments to U.S. Department of Transportation on Disability Complaint Reporting Requirements Filed MDA Comments to U.S. Department of Transportation on Disability Complaint Reporting Requirements
Government entities lobbied: Energy, Dept of; Federal Aviation Administration (FAA); HOUSE OF REPRESENTATIVES; SENATE; Transportation, Dept of (DOT); U.S. Architectural & Transportation Barriers Compliance Board (ACCESS)
EDU — EducationJoined Coalition Comments to FY2027 House Labor, Health and Human Services, and Education Appropriations Subcommittee for the Assistive Technology (AT) Act Joined Coalition Comments to U.S. Department of Education on Concerns on Proposal to Modify the Definition of Professional Degrees and to Implement Caps on Federal Student Loan Payments
Government entities lobbied: Education, Dept of; HOUSE OF REPRESENTATIVES; SENATE
RET — RetirementAdvocated for the Social Security Claims Processing Improvement Act Supported the ABC Act
Government entities lobbied: HOUSE OF REPRESENTATIVES; SENATE; Social Security Administration (SSA)
PHA — PharmacySupported Pharmacy Benefit Manager (PBM) Reform Patient Priorities Joined Coalition Comments to U.S. Senate Leadership in Support of the Give Kids a Chance Act
Government entities lobbied: Food & Drug Administration (FDA); HOUSE OF REPRESENTATIVES; SENATE
LAW — Law Enforcement/Crime/Criminal JusticeJoined Coalition Comments to House Judiciary Committee Re: Opposition to H.R. 6453, ADA 30 Days to Comply Act
Government entities lobbied: HOUSE OF REPRESENTATIVES; SENATE
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