Advocacy
Cure SMA on Capitol Hill – A Message from Allie Williams
Hey, it’s Allie here from Oklahoma! I am privileged to serve on the Cure SMA Adult Advisory Council and am part of a group of […]
Read More ›Key Congressional Committee Urges NIH to Address Unmet Needs of Individuals with SMA
On July 27th, the U.S. Senate Appropriations Committee supported a Cure SMA-requested provision asking the National Institutes of Health (NIH) to address the unmet needs […]
Read More ›New DOT Rule Will Require Truly Accessible Lavatories on New Single Aisle Aircraft
On the anniversary of the Americans with Disabilities Act, the U.S. Department of Transportation (DOT) announced a final rule that will require airlines to take […]
Read More ›Big Week in Washington for Cure SMA-Supported Legislation
This week, bills to address everyday challenges faced by individuals with spinal muscular atrophy (SMA) took important steps forward in the U.S. Congress. A key […]
Read More ›Congressional Committee Approves Legislation to Improve Air Travel for People with SMA and other Disabilities
This week, a key committee in the U.S. House of Representatives unanimously approved (63-0) aviation legislation that will make air travel more accessible for individuals with SMA […]
Read More ›Cure SMA Applauds Federal Agency Decision that Should Lead to Better Insurance Coverage for Seat Elevation Systems in Power Wheelchairs
Thanks to the advocacy of individuals with spinal muscular atrophy (SMA) and others, the Centers for Medicare and Medicaid Services (CMS) now considers seat elevation […]
Read More ›Congress Examines Ways to Improve Air Travel for People with Disabilities
The air travel challenges of people with disabilities took center-stage this week in Congress through two separate congressional hearings. Cure SMA used the congressional action […]
Read More ›District of Columbia Starts Screening for SMA During Rare Disease Month
Cure SMA is pleased to announce that the District of Columbia (DC) is now screening babies born in DC for spinal muscular atrophy (SMA). The […]
Read More ›NEW REPORT: SMA Community Describes Air Travel Experiences as “Good, but mostly Bad, and Ugly”
Despite federal laws and protections aimed at improving air travel for people with disabilities, a new report from Cure SMA highlights that the air travel […]
Read More ›Cure SMA Unveils Advocacy 101 Video Series in Conjunction with 118th Congress
Individuals with SMA and their families can learn how to advocate with their Members of Congress more effectively on issues important to them and the […]
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