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

Health Issues HCR

Joined coalition letter supporting appropriations for newborn screening 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 HHSs final rule on section 1557 of the ACA Joined Coalition Comments on 2026 Notice of Benefit and Payment Parameters (6.7.24) Joined coalition comments on Medicare Payment Plans Supported the ALS Better Care Act Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Joined Coalition Comments on Pending National Coverage Analysis for Standing Systems in Power Wheelchairs 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 Benefit Act Supported the MINI Act Supported the NIH Clinical Trial Diversity 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 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

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

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

Aviation/Airlines/Airports AVI

Advocated for stronger protections of individuals with disabilities when engaging with TSA Submitted coalition comments to DOT on the comment deadline extension on their proposed wheelchair users accessible air travel rule Advocated for the final passage of the FAA reauthorization Filed joint and individual comments on DOTs proposed rule on air travel accessibility

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

Budget/Appropriations BUD

Supported enhanced funding for NCATS, NIAMS, and the entire NIH Supported robust appropriations for the newborn screening program. Supported funding of ALS research, expanded access, and more Joined comments on education appropriations for those with disabilities Joined Coalition Comments on Supporting Non-Defense Discretionary Federal Funding in FY25

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

Medical/Disease Research/Clinical Labs MED

Joined coalition letter supporting appropriations for newborn screening 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 Benefit Act Supported the NIH Clinical Trial Diversity Act Supported robust funding for NCATS

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

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

Insurance INS

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 HHSs final rule on section 1557 of the ACA Joined Coalition Comments on 2026 Notice of Benefit and Payment Parameters (6.7.24) Joined coalition comments on Medicare Payment Plans Supported the ALS Better Care Act Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Joined Coalition Comments on Pending National Coverage Analysis for Standing Systems in Power Wheelchairs 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. 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

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

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

Medicare/Medicaid MMM

Joined coalition comments on Medicare Payment Plans Supported the ALS Better Care Act Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Joined Coalition Comments on Pending National Coverage Analysis for Standing Systems in Power Wheelchairs 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 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

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

Bills named: H.R. 4758 (118th), H.R. 7623 (118th), H.R. 7858 (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 HHSs final rule on section 1557 of the ACA Joined Coalition Comments on 2026 Notice of Benefit and Payment Parameters (6.7.24) Joined coalition comments on Medicare Payment Plans Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data 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

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

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

Transportation TRA

Submitted coalition comments to DOT on the comment deadline extension on their proposed wheelchair users accessible air travel rule Advocated for the final passage of the FAA reauthorization Filed joint and individual comments on DOTs proposed rule on air travel accessibility

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

Education EDU

Supported the RISE Act Supported the Full Funding is the Right IDEA Act Joined comments on education appropriations for those with disabilities

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

Law Enforcement/Crime/Criminal Justice LAW

Joined Coalition Comments to DOJ on Accessible Voting (5.30.24)

Contacted: Justice, Dept of (DOJ)

Welfare WEL

Joined Coalition Comments on SNAP in House Farm Bill Reauthorization

Contacted: SENATE; HOUSE OF REPRESENTATIVES; Agriculture, Dept of (USDA)