Register for Cure SMA’s Advocacy 101 Webinar: Learn How to Make a Difference

Leave a Comment / Advocacy, Community Awareness, Front Page News /

On Wednesday, February 20th at 12pm CST (10am PST/11am MST/1pm EST) Cure SMA’s Policy and Advocacy team will hold a webinar to update the SMA community on the current advocacy priorities. Advocacy can be confusing and intimidating, but it is critical to making sure that policymakers hear the voice of the SMA Community. Topics covered […]

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Cytokinetics Announces Receipt of FDA Feedback Regarding Reldesemtiv in Patients with SMA

Leave a Comment / Clinical Trials, Front Page News, Research /

Cytokinetics, Incorporated (CYTK) today announced that it has received feedback from the U.S. Food and Drug Administration (FDA) that the Six Minute Walk Test (6MWT) is an acceptable primary efficacy endpoint for a potential registration program for reldesemtiv in patients with spinal muscular atrophy (SMA) who have maintained ambulatory function. The FDA also recommended adding

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Cure SMA is Thrilled to Launch Its New and Refreshed Endurance Program: Team Cure SMA

Leave a Comment / Community Awareness, Events & Fundraising, Front Page News /

Start 2019 Strong by becoming a Team Cure SMA runner, registering a team or donating to a race today.  Team Cure SMA is an endurance program designed to connect runners and cyclists with Cure SMA. Cure SMA, is a 501(c)3 nonprofit organization dedicated to the treatment and cure of spinal muscular atrophy (SMA). SMA is a

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Be A Part of Cure SMA’s Valentine’s Day Advocacy Campaign and Support the Newborn Screening Saves Lives Reauthorization Act

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With Valentine’s Day rapidly approaching, we are showing our love for the Newborn Screening Saves Lives Reauthorization Act! Take action to support this very important bill by sending a Valentine’s Day card to your Members of Congress. Valentine’s Day Advocacy Campaign Be an advocate for newborn screening! It is time to get artistically creative and

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Heather Tomko on Goal-Setting for the New Year

Leave a Comment / Community Awareness, Community Spotlight, Front Page News /

Heather Tomko, Ms. Wheelchair USA 2018, shares her tips for starting 2019 strong. Thank you to Heather for contributing to Cure SMA’s Start 2019 Strong initiative! I’m not traditionally a big “New Year’s Resolutions” type of person. I don’t know exactly what it is – maybe it’s partially the fact that I don’t like to

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Fall 2018 Issue of Directions Now Available

Leave a Comment / Community Awareness, Front Page News, Support & Care /

The Fall 2018 issue of Directions is now available online. Please visit our Support & Care Publications page to download this issue or past issues of Directions. Our biannual newsletter builds our community by sharing stories and experiences. Families from all over the world connect with one another through Cure SMA to organize, share photos,

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Congratulations to the Winners of Cure SMA’s Video Contest!

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Cure SMA recently hosted a video contest to raise SMA awareness and provide the opportunity for teens and young adults (aged 12 to 21) to share their experiences. The purpose of this contest is to raise awareness about the impact that SMA has on teens and young adults, and the strategies used to help navigate

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Community Spotlight: Rebecca Smith and Micah Biello

Leave a Comment / Advocacy, Community Awareness, Community Spotlight, Front Page News /

When Micah Biello was diagnosed with spinal muscular atrophy type 1, no one in his family knew about the disease. Now four years later, Micah’s parents, grandparents, and other family members lead a Cure SMA Walk-n-Roll team named Micah’s Milers. The family has rallied around Micah. Not only do they fundraise, but they also help

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