The SMA community has been lobbying state and federal government for years. Kristen Smith shares how she became involved with advocacy. Kristen Smith describes herself as an artist and advocate. A powerful combination during a time where people across the country are standing up for their community and speaking out for their rights. Kristen is […]
Community Spotlight: Kristen Smith Read More »
We are thrilled to share that both Arkansas and Florida recently adopted SMA to their state newborn screening panels! They now join the growing list of states that have adopted SMA to their newborn screening panels. Arkansas Adopts SMA Newborn Screening Congratulations to Arkansas, who just passed legislation to add SMA to their newborn screening
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Audrey Lewis founded Families of SMA, now Cure SMA, 34 years ago. Audrey recognized early on the importance of attracting new and talented researchers to SMA, with the hope that they would commit their careers to developing a treatment and cure for SMA. Cure SMA honors Audrey’s legacy with the Audrey Lewis Young Investigator Award,
Amber Bosselman is your typical 22-year-old college senior. She is currently studying psychology in Idaho and planning to get her master’s degree in industrial psychology. Amber’s life is similar to other students, except she was born with a rare disease called spinal muscular atrophy (SMA). SMA is a disease that robs people of strength by
Community Spotlight: Amber Bosselman Read More »
1 in 20 people will live with a rare disease at some point in their life. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases. Throughout February, show your support of everyone affected by SMA and
Show Your Rare. Show You Care. Read More »
Cure SMA has awarded a $150,000 research grant to Laxman Gangwani, PhD, at the Texas Tech University Health Sciences Center, for his project entitled, “Function of Senataxin as a Protective Modifier of Spinal Muscular Atrophy”. Dr. Gangwani and his team will study how the expression of the Senataxin protein may serve as a protective genetic
Cure SMA Awards $150,000 Grant to Laxman Gangwani, PhD, Texas Tech University Read More »
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
Register for Cure SMA’s Advocacy 101 Webinar: Learn How to Make a Difference Read More »
Start 2019 strong! Plan out your year using the Cure SMA 2019 Goal List. Have you completed any of the items already? Which ones will you add to your plans for this year? Share on social media using the hashtag #Start2019Strong and tagging Cure SMA. Contact my local chapter. Participate in my first Walk-n-Roll. Attend
The Cure SMA 2019 Goal List Read More »
Dear Friends, Welcome to 2019! The start of the new year is a fantastic opportunity for us to share the exciting things we have planned for the new year. Here are a few things you can expect from us in 2019. Stay updated on the progress of our 2019 commitments by following us on Facebook,
Cure SMA’s 2019 Commitments to the Community Read More »
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
