In recent years, the FDA-approval of three new SMA treatments has made it possible for a growing number of affected individuals to receive disease-modifying drugs. In addition, many more potential SMA treatments are being studied in ongoing clinical trials, either alone or alongside approved treatments. This rapid increase in SMA research has made it more […]
Cure SMA Supports Clinical Trial Readiness Read More »
Each year, Cure SMA invites scientists from around the world to submit funding proposals for basic research projects that address specific unanswered questions in SMA biology. Our Scientific Advisory Board ranks the submitted proposals on both their scientific merit and relevance to the Cure SMA research priorities. This year, Cure SMA’s top basic research priorities
Cure SMA Awards $150,000 Grant to Alberto Kornblihtt, PhD, Universidad de Buenos Aires Read More »
Individuals with SMA and their families can learn how to advocate with their Members of Congress more effectively on issues important to them and the SMA community in a new advocacy 101 video series. In conjunction with the new 118th Congress, Cure SMA released a series of short, online videos that provide background on Congress
Cure SMA Unveils Advocacy 101 Video Series in Conjunction with 118th Congress Read More »
Our industry partners at Genentech recently released an SMA community letter summarizing 2022 developments and initiates. Check it out here!
Genentech Releases SMA Community Letter Read More »
The law that governs air travel in the United States is about to expire. Next year, Congress must consider air travel changes through a new Federal Aviation Administration (FAA) reauthorization bill. The last time the law was updated (2018), Congress included several provisions aimed at making air travel more accessible for people with disabilities. (For
Share Your Air Travel Concerns & Experiences for Cure SMA Report to Congress Read More »
Congressional leaders and key partners, supporters, and members of the spinal muscular atrophy (SMA) community celebrated SMA achievements and advocacy at Cure SMA’s 11th Annual Hope on the Hill Congressional Event. Hope on the Hill is an annual event to increase awareness about SMA and recognize policymakers and other key partners for helping to advance
SMA Community Progress & Advocacy Featured at Cure SMA Hope on the Hill Event Read More »
On December 6th, Cure SMA will highlight the progress made in spinal muscular atrophy (SMA) and recognize the advocacy that helped lead to this success in a special event in our nation’s capital. Cure SMA has hosted an annual Hope on the Hill congressional dinner and reception in Washington, D.C. since 2010 to increase awareness
Cure SMA to Host 11th Annual Hope on the Hill Event in Washington, D.C. Read More »
Learn about Biogen’s latest news in SMA by viewing their Community Statement and a related video.
Biogen Releases Q3 SMA Community Statement Read More »
Cure SMA leads the way to a world where everyone impacted by SMA is empowered to lead their best lives. As 2022 comes to a close, we celebrate stories of breakthroughs powered by research and care, while also recognizing that our work is not done. This is Cure SMA’s commitment to our community. Key components
The Giving Season is Here! Read More »
Play is important for kids. It allows children to develop cognitive, social, emotional, and physical skills while engaging creatively. But it’s not just how kids play that’s important, what they play with also matters. Which is why Michelle Tynski, mom to nine-year-old Trace, Benjamin who passed away in 2016, and 3-year-old Zach, who has Type
Community Spotlight: Michelle Tynski and Family Read More »
