MUSCULAR DYSTROPHY ASSOCIATION, INC. for MUSCULAR DYSTROPHY ASSOCIATION, INC.

Health Issues HCR

Supported the Accelerating Kids' Access to Care Act Supported a joint request for Fiscal Year 2026 Appropriations for ALS Programs 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 Continued efforts to reauthorize the ACT for ALS 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 the ABC Act Supported legislation that increases access to home and community-based services Supported the HEARD Act Joined Coalition Comments to U.S. FDA for Feedback on Prescription Drug User Fee Act (PDUFA) VIII Stakeholder Consultation Meetings Joined Coalition Comments for Passage of the Senate FY 2026 Labor, Health and Human Services, Education, and Related Agencies Appropriations Bill Filed Comments re: Senate Special Committee on Aging Hearing "Aging in Place: The Impact of Community during the Holidays" Filed Comments re: Urgent Consideration of Enhanced Premium Tax Credits (eAPTCs) Extension and Labor/HHS Appropriations Filed Comments re: Senate Finance Committee Hearing: The Rising Cost of Health Care: Considering Meaningful Solutions for All Americans Filed Comments re: House Ways and Means Subcommittee Hearing: Modernizing Care Coordination to Prevent and Treat Chronic Disease (11.19.2025) Joined Coalition Comments re: Senate Finance Committee Hearing: The Rising Cost of Health Care: Considering Meaningful Solutions for All Americans Joined Coalition Comments re: House Ways and Means Subcommittee Hearing: Modernizing Care Coordination to Prevent and Treat Chronic Disease Joined Coalition Comments to FDA Urging Use of the Accelerated Approval Pathway for LGMD Therapies Joined Coalition Comments Urging Congress to Find a Solution to Expiration of eAPTCs Joined Coalition Comments Calling on Appropriations Leaders to Finalize NIH Funding Joined Coalition Comments Re: Support for the Medicare Orthotics & Prosthetics Patient-Centered Care Act Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) Administrator Oz on Implementation of New Community Engagement Requirements Enacted by H.R. 1 Joined Coalition Comments to Administration Officials Regarding Junk Insurance Plans Marketplace Integrity and Affordability Rule Advocated for the finalization of the Muscular Dystrophy Coordinating Committee action plan Advocated for the passage of the Newborn Screening Saves Lives Act

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

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

Aviation/Airlines/Airports AVI

Encouraged Congress to maintain its oversight of the implementation of the FAA Reauthorization Act of 2024.

Contacted: HOUSE OF REPRESENTATIVES; Transportation, Dept of (DOT); SENATE; U.S. Architectural & Transportation Barriers Compliance Board (ACCESS); Federal Aviation Administration (FAA)

Budget/Appropriations BUD

Supported a joint request for Fiscal Year 2026 Appropriations for ALS Programs Supported 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 Joined Coalition Comments for Passage of the Senate FY 2026 Labor, Health and Human Services, Education, and Related Agencies Appropriations Bill Joined Coalition Comments Calling on Appropriations Leaders to Finalize NIH Funding

Contacted: Natl Institutes of Health (NIH); Education, Dept of; Food & Drug Administration (FDA); Health & Human Services, Dept of (HHS); Defense, Dept of (DOD); Centers For Disease Control & Prevention (CDC); Health Resources & Services Administration (HRSA); HOUSE OF REPRESENTATIVES; SENATE; U.S. Architectural & Transportation Barriers Compliance Board (ACCESS)

Medical/Disease Research/Clinical Labs MED

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 Continued efforts to reauthorize the ACT for ALS Joined Coalition Comments to U.S. FDA for Feedback on Prescription Drug User Fee Act (PDUFA) VIII Stakeholder Consultation Meetings Joined Coalition Comments to FDA Urging Use of the Accelerated Approval Pathway for LGMD Therapies Advocated for the finalization of the Muscular Dystrophy Coordinating Committee action plan

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

Medicare/Medicaid MMM

Opposed the One Big Beautiful Bill Act Supported 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 Joined Coalition Comments Re: Support for the Medicare Orthotics & Prosthetics Patient-Centered Care Act Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) Administrator Oz on Implementation of New Community Engagement Requirements Enacted by H.R. 1 Supported the ABC Act

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

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

Insurance INS

Supported the Accelerating Kids' Access to Care Act Opposed the One Big Beautiful Bill Act Supported the reintroduction of the Patient Access Act Filed Comments re: Urgent Consideration of Enhanced Premium Tax Credits (eAPTCs) Extension and Labor/HHS Appropriations Joined Coalition Comments Urging Congress to Find a Solution to Expiration of eAPTCs Joined Coalition Comments Re: Renewing Expiring Enhanced Premium Tax Credits (eAPTCs) Joined Coalition Comments to Administration Officials Regarding Junk Insurance Plans Marketplace Integrity and Affordability Rule

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

Transportation TRA

Joined Coalition Comments re: Accessibility Considerations to Ensure Access and Safety for Disabled Travelers in Autonomous Vehicle Legislation and Provisions in Surface Transportation Reauthorization Supported the DATA Act

Contacted: Federal Aviation Administration (FAA); Transportation, Dept of (DOT); HOUSE OF REPRESENTATIVES; SENATE; U.S. Architectural & Transportation Barriers Compliance Board (ACCESS)

Education EDU

Joined Coalition Comments Calling for Senate Oversight Hearing re: Department of Education RIFs & Impacts on Individuals with Disabilities Education Act and Section 504 of the Rehabilitation Act of 1973 Joined Coalition Comments Calling for Reversal of Layoffs at U.S. Department of Education and Impacts on the Disability Community Joined Coalition Comments to Secretary of Education McMahon Re: The Use of the Phrase Special Needs in Official U.S. Department of Education Communications Advocated for the IDEA Full Funding Act Advocated for a resolution celebrating the 50th anniversary of the IDEA

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

Retirement RET

Filed Comments re: Senate Special Committee on Aging Hearing "Aging in Place: The Impact of Community during the Holidays" Advocated for the Social Security Claims Processing Improvement Act Supported the ABC Act

Contacted: HOUSE OF REPRESENTATIVES; SENATE; Social Security Administration (SSA)

Pharmacy PHA

Supported Pharmacy Benefit Manager (PBM) Reform Patient Priorities

Contacted: HOUSE OF REPRESENTATIVES; SENATE

Immigration IMM

Joined Coalition Comments to U.S. Dept. of Homeland Security on Proposed Public Charge Ground of Inadmissibility Rule

Contacted: SENATE; HOUSE OF REPRESENTATIVES; Homeland Security, Dept of (DHS)

Consumer Issues/Safety/Products CSP

Joined Coalition Comments to U.S. Consumer Financial Protection Bureau re: Fair Credit Reporting Act (FCRA) Guidance

Contacted: Consumer Financial Protection Bureau (CFPB); HOUSE OF REPRESENTATIVES; SENATE