2025 second_quarter Filing

Opposed the One Big Beautiful Bill Act Joined Coalition Comments Related to H.R. 2528, the Association Health Plans Act and H.R. 2571, the Self-Insurance Protection Act Joined Coalition Comments and a Meeting Request to Discuss Pending National Coverage Analysis for Standing Systems in Power Wheelchairs Joined Coalition Comments to FDA Commissioner Makary Requesting Town Hall Meetings with Patient Advocacy Organizations Joined Coalition Comments to Congressional Leadership in Support of National Institutes of Health Joined Coalition Comments to Congressional Appropriations Leaders in Support of National Institutes of Health (6.5.2025) Wrote a Letter to Chair and Ranking Member of the House and Senate Appropriations Subcommittees on Labor, Health, Human Services and Education on FY26 Newborn Screening Program Appropriations Joined Coalition Comments to Congressional Leadership on Support for NIH and Brain Health Joined Coalition Comments to House Appropriations Leaders on Biomedical Research Joined Coalition Comments to House of Representatives Leadership on ACA Marketplace Concerns in Reconciliation Joined Coalition Comments to House and Senate Appropriations Leaders on NIAMS FY26 Appropriations Joined Coalition Comments to HHS Secretary Kennedy on Elimination of Advisory Committee on Heritable Disorders in Newborns and Children Joined Coalition Comments in Support of the HCBS Settings Rule Joined Coalition Comments in Response to the U.S. Department of Health and Human Services (HHS) and Centers for Medicare and Medicaid Services (CMS) for the Marketplace Integrity and Affordability Proposed Rule Submitted MDA Comments in Response to the U.S. Department of Health and Human Services (HHS) and Centers for Medicare and Medicaid Services (CMS) for the Marketplace Integrity and Affordability Proposed Rule Joined Coalition Comments in Support of the CONNECT for Health Act 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