Advocacy

Congressional Committee Approves Legislation to Improve Air Travel for People with SMA and other Disabilities

June 16, 2023
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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 […]

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Cure SMA Applauds Federal Agency Decision that Should Lead to Better Insurance Coverage for Seat Elevation Systems in Power Wheelchairs

May 25, 2023
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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 […]

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Congress Examines Ways to Improve Air Travel for People with Disabilities

March 24, 2023
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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 […]

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District of Columbia Starts Screening for SMA During Rare Disease Month

February 22, 2023
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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 […]

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NEW REPORT: SMA Community Describes Air Travel Experiences as “Good, but mostly Bad, and Ugly”

February 16, 2023
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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 […]

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Cure SMA Unveils Advocacy 101 Video Series in Conjunction with 118th Congress

January 13, 2023
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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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Share Your Air Travel Concerns & Experiences for Cure SMA Report to Congress

December 15, 2022
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The law that governs air travel in the United States is about to expire. Next year, Congress must consider air travel changes through a new […]

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SMA Community Progress & Advocacy Featured at Cure SMA Hope on the Hill Event

December 12, 2022
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Congressional leaders and key partners, supporters, and members of the spinal muscular atrophy (SMA) community celebrated SMA achievements and advocacy at Cure SMA’s 11th Annual […]

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SMA Community Seeks SSI Improvements on Program’s 50th Anniversary

October 30, 2022
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Fifty years ago today, the Supplemental Security Income (SSI) program was created to “provide supplemental security income to individuals who have attained age 65 or […]

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Special NBS Awareness Month Announcement: South Carolina Screens for SMA!

September 26, 2022
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Cure SMA is pleased to announce that South Carolina is now screening babies born in the state for spinal muscular atrophy (SMA). South Carolina Department […]

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