Advocacy

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

Seat Elevators on Power Wheelchairs are a Necessity, not a Luxury, according to the SMA Community

September 13, 2022
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Individuals with spinal muscular atrophy (SMA) who utilize power wheelchairs for their mobility agree that seat elevation, which allows an individual to adjust their wheelchair […]

Cure SMA Advocacy Campaign Leads to Congressional Support for More SMA Research

August 3, 2022
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Congress has recognized the unmet and new needs of individuals with SMA by including legislative language in must-pass legislation asking the National Institutes of Health […]

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