February 13, 2019
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...
February 11, 2019
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...
February 5, 2019
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...
January 30, 2019
Dear SMA Community,
At the start of a new year, many of us begin to plan for the next 12 months. We anticipate the possibility of new achievements and look forward to new opportunities. In that spirit, we at Cure SMA wanted to share with you a look ahead to 2019.
We expect two...
January 29, 2019
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
January 28, 2019
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...
January 22, 2019
Cytokinetics, Incorporated (CYTK) today announced that it has received feedback from the U.S. Food and Drug Administration (FDA) that the Six Minute Walk...
January 17, 2019
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...
January 16, 2019
Be A Part of Cure SMA's Valentine's Day Advocacy Campaign and Support the Newborn Screening Saves Lives Reauthorization Act
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.
January 16, 2019
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...