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

Health Issues HCR

Testified in front of the ACHDNC on newborn screening Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Provided comments to Energy and Commerce Committee on Medicaid access Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the MINI Act Supported the NIH Clinical Trial Diversity Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported robust funding for NCATS Supported robust funding for NIAMS Filed comments, and joined coalition comments, on the Consumer Financial Protection Bureau Proposed Medical Debt Rule Filed comments to the FDA on the Platform Technology Designation Program for Drug Development Guidance for Industry Joined Coalition Comments to the Contract Year 2025 Medicare Physician Fee Schedule Proposed Rule Joined Coalition Comments in Support of the Think Differently Database Act Testified in front of an FDA CBER Patient Listening Session Filed comments to FDA in Response to Diversity Action Plan Guidance Prepared for the reauthorization of the ACT for ALS

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

Bills named: H.R. 4758 (118th), H.R. 7384 (118th), H.R. 7383 (118th), H.R. 7858 (118th), H.R. 7623 (118th)

Aviation/Airlines/Airports AVI

Joined coalition comments on the role of AI in assisting those with disabilities in transportation Joined Coalition Comments to the Department of Transportation Urging Finalization of the Wheelchair User Experience Rule

Contacted: SENATE; HOUSE OF REPRESENTATIVES; Transportation, Dept of (DOT); Federal Aviation Administration (FAA)

Budget/Appropriations BUD

Supported enhanced funding for NCATS, NIAMS, and the entire NIH Supported robust appropriations for the newborn screening program.

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

Retirement RET

Joined coalition comments on the process the Social Security Administration takes in requesting additional information Supported the SSI Savings Penalty Elimination Act

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

Taxation/Internal Revenue Code TAX

Supported the ENABLE Act, legislation to better amplify the importance of ABLE accounts

Contacted: HOUSE OF REPRESENTATIVES; SENATE; Internal Revenue Service (IRS)

Medical/Disease Research/Clinical Labs MED

Testified in front of the ACHDNC on newborn screening Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the NIH Clinical Trial Diversity Act Supported robust funding for NCATS Filed comments to the FDA on the Platform Technology Designation Program for Drug Development Guidance for Industry Testified in front of an FDA CBER Patient Listening Session Filed comments to FDA in Response to Diversity Action Plan Guidance Prepared for the reauthorization of the ACT for ALS

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

Bills named: H.R. 7383 (118th), H.R. 7384 (118th)

Medicare/Medicaid MMM

Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported the MINI Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the Access to Genetic Counseling Services Act Joined Coalition Comments to the Contract Year 2025 Medicare Physician Fee Schedule Proposed Rule

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

Bills named: H.R. 7623 (118th), H.R. 4758 (118th), H.R. 7858 (118th)

Insurance INS

Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Joined Coalition Comments to the Contract Year 2025 Medicare Physician Fee Schedule Proposed Rule

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

Bills named: H.R. 7858 (118th), H.R. 4758 (118th), H.R. 7623 (118th)

Pharmacy PHA

Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Testified in front of an FDA CBER Patient Listening Session Prepared for the reauthorization of the ACT for ALS Filed comments to the FDA on the Platform Technology Designation Program for Drug Development Guidance for Industry

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

Bills named: H.R. 7384 (118th), H.R. 7383 (118th), H.R. 7858 (118th), H.R. 7623 (118th)

Transportation TRA

Joined coalition comments on the role of AI in assisting those with disabilities in transportation Joined Coalition Comments to the Department of Transportation Urging Finalization of the Wheelchair User Experience Rule

Contacted: HOUSE OF REPRESENTATIVES; Transportation, Dept of (DOT); SENATE; Federal Aviation Administration (FAA)

Education EDU

Supported the RISE Act Supported the Full Funding is the Right IDEA Act

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

Civil Rights/Civil Liberties CIV

Joined coalition comments on online systems to assist disabled voters in the voting registration process

Contacted: Election Assistance Commission (EAC)