MUSCULAR DYSTROPHY ASSOCIATION, INC.

Submitted a joint request for Fiscal Year 2026 Appropriations for ALS Programs (3.18.2025) Supported appropriations for newborn screening programs at HRSA and CDC

Filed MDA Comments in Response to NIH Strategic Plan Request for Comment (3.12.2025) Opposed Funding Cuts in Recently Introduced Continuing Resolution (3.11.2025) 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 Commenced efforts to reauthorize the ACT for ALS

Supported the Accelerating Kids' Access to Care Act (3.26.2025) Joined a coalition comments in Support of Preserving Patient Access to Home Infusion Act (3.13.2025) Opposed U.S. House Adoption of Budget Resolution (2.26.2025) Supported legislation on Securing Access to Telehealth Services (2.24.2025) Defended Medicaid from potential harmful cuts Supported legislation to expand access to HCBS Supported the reintroduction of the MVP Act Supported the reintroduction of the ALS Better Care Act Supported the reintroduction of the Access to Genetic Counseling Services Act

Supported the Accelerating Kids' Access to Care Act (3.26.2025) Submitted a joint request for Fiscal Year 2026 Appropriations for ALS Programs (3.18.2025) Joined a coalition comments in Support of Preserving Patient Access to Home Infusion Act (3.13.2025) Filed MDA Comments in Response to NIH Strategic Plan Request for Comment (3.12.2025) Opposed Funding Cuts in Recently Introduced Continuing Resolution (3.11.2025) Joined Coalition Comments on U.S. Department of Health and Human Services Removal of Notice and Comment Opportunities (3.6.2025) Joined Comments on Legislative Efforts to Undermine the Regulatory Process and Weaken Public Health Protections (3.4.2025) Opposed U.S. House Adoption of Budget Resolution (2.26.2025) Supported Pharmacy Benefit Manager (PBM) Reform Patient Priorities (2.25.2025) Supported legislation on Securing Access to Telehealth Services (2.24.2025) Expressed opposition to effort that caps indirect costs in NIH grants to 15% Joined Coalition Comments on Wheelchair Repairs and Maintenance Policy Recommendations (2.5.2025) Joined Coalition Comments on Trump Administration Defending No-Cost Preventive Care in Braidwood Case (1.30.2025) Joined Coalition Comments on Wheelchair Repair Solutions and Principles (1.29.2025) Joined Coalition Comments to President Trump on Rare Disease Community Priorities (1.24.2025) Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Commenced efforts to reauthorize the Newborn Screening Saves Lives Reauthorization Act Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Defended Medicaid from potential harmful cuts Commenced efforts to reauthorize the ACT for ALS Supported the reintroduction and passage of the RARE Act Supported Pharmacy Benefit Manager (PBM) Reform Patient Priorities (2.25.2025) Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Commenced efforts to reauthorize the ACT for ALS Supported the reintroduction and passage of the RARE Act Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act

Joined a letter to Secretary of Transportation Duffy on the Air Travel Experience for Disabled Veterans and Passengers with Disabilities (2.25.2025) Filed MDA Comments on Airline Passenger Rights Notice of Proposed Rulemaking (NPRM) (2.10.2025) Filed MDA Comments on Nondiscrimination on the Basis of Disability Air Travel Information Collection Advanced NPRM (2.10.2025)

Supported the Accelerating Kids' Access to Care Act (3.26.2025) Joined a coalition comments in Support of Preserving Patient Access to Home Infusion Act (3.13.2025) Supported legislation on Securing Access to Telehealth Services (2.24.2025) Joined Coalition Comments on Trump Administration Defending No-Cost Preventive Care in Braidwood Case (1.30.2025) Supported legislation to expand access to HCBS Supported the reintroduction of the Patient Access Act

Joined a letter to Secretary of Transportation Duffy on the Air Travel Experience for Disabled Veterans and Passengers with Disabilities (2.25.2025) Filed MDA Comments on Airline Passenger Rights Notice of Proposed Rulemaking (NPRM) (2.10.2025) Filed MDA Comments on Nondiscrimination on the Basis of Disability Air Travel Information Collection Advanced NPRM (2.10.2025)

Joined Coalition Comments on U.S. Secretary of Education Nominee Linda McMahon (2.6.2025) Opposed efforts by the Administration to dismantle the Department of Education

Expressed concern to Congress on Ongoing Developments at the Social Security Administration (SSA) (3.20.2025) Joined Coalition Comments in Support of the SSI Savings Penalty Elimination Act (3.10.2025)

Supported the Credit for Caring Act