News
February 22, 2019
Arkansas and Florida Adopt SMA Newborn Screening
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...
Topics: Community & Awareness, Advocacy, Front Page News
February 22, 2019
Cure SMA Awards $150,000 Grant to Veronica Pessino, PhD, Salk Institute for Biological Sciences
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...
Topics: Our Impact, Research, Front Page News
February 21, 2019
Community Spotlight: Amber Bosselman
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...
Topics: Community & Awareness, Conference, Front Page News
February 13, 2019
Show Your Rare. Show You Care.
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...
Topics: Community & Awareness, Support & Care, Front Page News
February 11, 2019
Cure SMA Awards $150,000 Grant to Laxman Gangwani, PhD, Texas Tech University
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...
Topics: Our Impact, Research, Front Page News
February 5, 2019
Register for Cure SMA's Advocacy 101 Webinar: Learn How to Make a Difference
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...
Topics: Community & Awareness, Advocacy, Front Page News
January 30, 2019
A Look Ahead to 2019 – From Cure SMA President, Kenneth Hobby
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...
Topics: Community & Awareness, About Us, Front Page News
January 29, 2019
The Cure SMA 2019 Goal List
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
Topics: Community & Awareness, Events & Fundraising, Front Page News
January 28, 2019
Cure SMA's 2019 Commitments to the Community
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...
Topics: Community & Awareness, About Us, Front Page News
January 22, 2019
Cytokinetics Announces Receipt of FDA Feedback Regarding Reldesemtiv in Patients with SMA
Cytokinetics, Incorporated (CYTK) today announced that it has received feedback from the U.S. Food and Drug Administration (FDA) that the Six Minute Walk...
Topics: Clinical Trials, Research, Front Page News
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