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

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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 SMA community in a new advocacy 101 video series. In conjunction with the new 118th Congress, Cure SMA released a series of short, online videos that provide background on Congress […]

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Share Your Air Travel Concerns & Experiences for Cure SMA Report to Congress

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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 Federal Aviation Administration (FAA) reauthorization bill. The last time the law was updated (2018), Congress included several provisions aimed at making air travel more accessible for people with disabilities. (For

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

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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 Hope on the Hill Congressional Event. Hope on the Hill is an annual event to increase awareness about SMA and recognize policymakers and other key partners for helping to advance

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Cure SMA to Host 11th Annual Hope on the Hill Event in Washington, D.C.

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On December 6th, Cure SMA will highlight the progress made in spinal muscular atrophy (SMA) and recognize the advocacy that helped lead to this success in a special event in our nation’s capital. Cure SMA has hosted an annual Hope on the Hill congressional dinner and reception in Washington, D.C. since 2010 to increase awareness

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Community Spotlight: Michelle Tynski and Family

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Play is important for kids. It allows children to develop cognitive, social, emotional, and physical skills while engaging creatively. But it’s not just how kids play that’s important, what they play with also matters. Which is why Michelle Tynski, mom to nine-year-old Trace, Benjamin who passed away in 2016, and 3-year-old Zach, who has Type

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Positive New Data for Genentech’s Evrysdi in Largest Trial Ever Undertaken in Patients With Previously-Treated Spinal Muscular Atrophy (SMA)

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Genentech, announced earlier this month new two-year data from the JEWELFISH study evaluating Evrysdi® (risdiplam) in people with Type 1, 2 or 3 SMA aged 6 months to 60 years at time of enrollment. Patients had been previously treated with other approved or investigational SMA-targeting therapies, including Spinraza® or Zolgensma®. Data showed Evrysdi improved or maintained motor function

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

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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 are blind or disabled” for their basic living needs, such as housing, clothing, medical costs, and food. The program and its monthly cash benefit have been a lifeline for many

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