Cure SMA Advocacy Letters & Statements
Action Alert
2026  (Click here to access archived letters & statements)

06/16/26: Cure SMA Urges Caution in Changes to Current Federal Grants Management Process that has led to SMA Treatment Breakthroughs

06/11/26: Cure SMA Seeks Disability Provisions in Surface Transportation Reauthorization

06/11/26: Cure SMA Joins +100 National Organizations Urging Timely Access to Treatments

05/13/26: Cure SMA and 200 Organizations Urge Congress to Support Medical Research Funding

05/06/26: Cure SMA joins other National Organizations to Request Housing Investments for People with Disabilities

5/05/26: Cure SMA Releases Policy Brief to Congress on Importance of Medicaid Home Care for People with SMA 

04/14/26: Cure SMA joins 350 Disability and Aging Organizations in Urging Congress to Protect Home Care Against Changes & Cuts

04/14/26: Cure SMA Submits Written Testimony in Support of NIH funding and Spinal Muscular Atrophy Research

03/24/26: Cure SMA Urges CMS to Reconsider its Coverage Proposal Related to Seat Elevation Systems in Group 2 Wheelchairs

03/19/26: Cure SMA and other National Organizations Support Federal Funding for Assistive Technology Programs

03/18/26: Cure SMA Highlights Importance of SMA Research at Congressional Hearing on NIH Research

03/06/26: Cure SMA Supports Bipartisan Legislation to Improve ABLE Account

02/17/26: Cure SMA requests Support for Ending the Disability Marriage Penalty 

01/27/26: Cure SMA and other National Organizations to Comment on DOT Accessible Air Travel Reporting Requirements

01/23/26: Cure SMA joins 180 Organizations in Support of Extending FDA Rare Disease Voucher Program 

01/22/26: Cure SMA Supports Medical Research Investments in the Consolidated Appropriations Act of 2026

01/12/26: Cure SMA Urges State Medicaid Agencies to Protect Medicaid Coverage for People with Spinal Muscular Atrophy

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