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 »
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
Congratulations to the Winners of Cure SMA’s Video Contest! Read More »
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
Community Spotlight: Rebecca Smith and Micah Biello Read More »
On January 7th, PTC Therapeutics, Inc. provided a corporate update, which will be detailed as part of the company’s presentation at the 37th Annual J.P. Morgan Healthcare Conference. As part of the update, progress on regulatory filing for risdiplam was outlined. The risdiplam program is a collaboration between PTC, Genentech/Roche and SMA Foundation. The following
Genentech, Roche and PTC Therapeutics Provide Update on Regulatory Filing for Risdiplam Read More »
Are you or a family member between the ages of 12 and 25? Do you want to share your opinion on living with SMA and what is important to you regarding treatment options? In late November, Cure SMA launched the SMA Teen and Young Adult Clinical Meaningfulness Survey. Anyone with SMA between the ages of
Teen and Young Adult Survey Extended Through January 21st Read More »
