MUSCULAR DYSTROPHY ASSOCIATION, INC.

Advocated for the passage of the Alleviating Barriers to Caregiving 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 Joined a CCD LTSS/DAC Coalition Letter Re: Extension of Money Follows the Person and Spousal Impoverishment Provisions Submitted MDA Comments on Demonstrating Substantial Evidence of Effectiveness for Human Drug and Biological Products - Draft Guidance for Industry Joined a ALS Organization Group Letter to Senate Leadership Urging Finalization and Passage of ACT for ALS Reauthorization Joined a Payer and Consumer Coalition Letter Urging Congress to Close Loopholes in No Surprises Act Joined ITEM Coalition Comments in Response to the Calendar Year 2027 Home Health Prospective Payment System Proposed Rule (8.31.2026) Joined the Coalition to Preserve Rehabilitations Comments in Response to the 2027 Proposals Impacting Medicare Billing Privileges Joined a Letter from ALS Organizations to Senate HELP and House Energy and Commerce Leadership Urging Passage of Senate Version of ACT for ALS Submitted Comments to U.S. Senate Finance Committee Ranking Member Wyden on Request for Information: Commonsense Policy Options to Lower Drug Prices for Patients Joined ITEM Coalition Letter to U.S. Senate Leadership and Senate Finance Committee Chair Crapo and Ranking Member Wyden Re: Support for the Choices for Increased Mobility Act of 2026 Joined Partnership to Protect Coverage Letter to Congressional Leadership Re: Medicaid IFR Community Engagement Requirements Joined Coalition to Preserve Rehabilitation Comments in Support of Proposed ICD-10-CM Diagnosis Code for Spasticity Issued an MDA Statement for the Record Senate Budget Committee Hearing on Medicaid Joined CCD/Disability and Aging Collaborative Comments to CMS Re: Medicaid Program; Community Engagement Requirement for Certain Individuals - CMS-2454-IFC Joined MDA Comments to CMS Re: Medicaid Program; Community Engagement Requirement for Certain Individuals - CMS-2454-IFC Issued MDA Testimony to the July 29, 2026 FDA Cellular, Tissue, and Gene Therapies Advisory Committee Meeting on Deramiocel Submitted MDA Comments to CMS and HHS Re: Notice of Proposed Rulemaking, Medicaid Program; Medicaid Managed Care State Directed Payments and Medicaid Fee-for-Service Targeted Medicaid Practitioner Payments Joined CCD LTSS Task Force and Disability and Aging Collaborative Comments to CMS Re: Medicaid Managed Care State Directed Payments and Medicaid Fee-for-Service Targeted Medicaid Practitioner Payments Joined MAPRx Coalition Comments to CMS Request for Information: Pharmacy Benefit Manager Compensation and Data Collection Joined an ALS Stakeholder Letter Re: ACT for ALS Reauthorization Act (H.R. 8205) Joined a CCD Coalition Letter to HHS Office for Civil Rights Re: Extension of Compliance Dates for Nondiscrimination on the Basis of Disability; Accessibility of Web Content and Mobile Applications of Recipients of Departmental Financial Assistance - CCD Rights TF Advocated for the passage of the ACT for ALS Reauthorization Act Supported efforts for Congress to assert the continued importance of the Olmstead decision.

Joined a Disability Advocates Letter to TSA Re: Intent To Request Revision From OMB of One Current Public Collection of Information: TSA Customer Comment Card Joined a Disability Advocates Letter to FAA Requests for Comments; Clearance of a New Approval of Information Collection: Passenger Evacuation Experience Survey Advocated for the Air Carrier Access Amendments Act Advocated for Congressional oversight of the implementation of accessible air travel reforms from the 2024 FAA Reauthorization Act

Supported robust appropriations for the NIH, CDC, FDA, and other critical agencies for our community Joined a CCD Task Force Letter to Congressional Leadership Re: Office of Management and Budget (OMB) Regulation for Federal Financial Assistance Proposed Rule Joined a United for Cures Letter to Congressional Leadership Re: Office of Management and Budget (OMB) Regulation for Federal Financial Assistance Proposed Rule Led a Neuromuscular Advocacy Collaborative (NMAC) Letter to Office of Management and Budget (OMB) Re: Regulation for Federal Financial Assistance Proposed Rule Urged Congress to enact a permanent ban on the implementation of OMB's Regulation for Federal Financial Assistance Proposed Rule

Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Joined a ALS Organization Group Letter to Senate Leadership Urging Finalization and Passage of ACT for ALS Reauthorization Joined a Letter from ALS Organizations to Senate HELP and House Energy and Commerce Leadership Urging Passage of Senate Version of ACT for ALS Joined an ALS Stakeholder Letter Re: ACT for ALS Reauthorization Act (H.R. 8205)

Supported the MVP Act Supported the Patient Access Act Supported the ALS Better Care Act Supported the Access to Genetic Counseling Services Act Supported the Alleviating Barriers to Caregiving Act Joined ITEM Coalition Comments in Response to the Calendar Year 2027 Home Health Prospective Payment System Proposed Rule Joined the Coalition to Preserve Rehabilitations Comments in Response to the 2027 Proposals Impacting Medicare Billing Privileges Submitted Comments to U.S. Senate Finance Committee Ranking Member Wyden on Request for Information: Commonsense Policy Options to Lower Drug Prices for Patients Joined Partnership to Protect Coverage Letter to Congressional Leadership Re: Medicaid IFR Community Engagement Requirements Issued an MDA Statement for the Record Senate Budget Committee Hearing on Medicaid Joined CCD/Disability and Aging Collaborative Comments to CMS Re: Medicaid Program; Community Engagement Requirement for Certain Individuals - CMS-2454-IFC Joined MDA Comments to CMS Re: Medicaid Program; Community Engagement Requirement for Certain Individuals - CMS-2454-IFC Submitted MDA Comments to CMS and HHS Re: Notice of Proposed Rulemaking, Medicaid Program; Medicaid Managed Care State Directed Payments and Medicaid Fee-for-Service Targeted Medicaid Practitioner Payments Joined CCD LTSS Task Force and Disability and Aging Collaborative Comments to CMS Re: Medicaid Managed Care State Directed Payments and Medicaid Fee-for-Service Targeted Medicaid Practitioner Payments Joined MAPRx Coalition Comments to CMS Request for Information: Pharmacy Benefit Manager Compensation and Data Collection

Supported the reintroduction of the Patient Access Act

Joined a Disability Advocates Letter to TSA Re: Intent To Request Revision From OMB of One Current Public Collection of Information: TSA Customer Comment Card Joined a Disability Advocates Letter to FAA Requests for Comments; Clearance of a New Approval of Information Collection: Passenger Evacuation Experience Survey (9.14.2026) Advocated for the Air Carrier Access Amendments Act Advocated for Congressional oversight of the implementation of accessible air travel reforms from the 2024 FAA Reauthorization Act

Joined a CCD Education Task Force Letter to Congressional Appropriations Committee Chairs and Ranking Members Re: FY 2027 Appropriations Request Joined a Coalition Letter to Sens. Murray and Collins Organized by PACER Re: Language Prohibiting ED IAAs in FY27 LHHS Appropriations Bill Joined CCD Education Task Force Statement on S.5046, Prohibiting Transfer of OSERS and Other ED Offices Out of U.S. ED

Submitted MDA Comments on Demonstrating Substantial Evidence of Effectiveness for Human Drug and Biological Products - Draft Guidance for Industry Issued MDA Testimony to the July 29, 2026 FDA Cellular, Tissue, and Gene Therapies Advisory Committee Meeting on Deramiocel

Joined a Partnership to Protect Coverage Letter to Acting Secretary Sonderling and Assistant Secretary Aronowitz Re: Potential Settlement in Data Marketing Partnership v. U.S. DOL

Joined CCD Coalition Letter on the Farm Bill

Joined a CCD Coalition Letter to HHS Office for Civil Rights Re: Extension of Compliance Dates for Nondiscrimination on the Basis of Disability; Accessibility of Web Content and Mobile Applications of Recipients of Departmental Financial Assistance - CCD Rights TF