2025 fourth_quarter Filing

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