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
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
Cure SMA is Thrilled to Launch Its New and Refreshed Endurance Program: Team Cure SMA Read More »
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
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
Heather Tomko on Goal-Setting for the New Year Read More »
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,
Fall 2018 Issue of Directions Now Available Read More »
