Cure SMA is pleased to announce the creation of a new chapter in Arkansas! Led by co-chairpersons Kelly and Jason Alexander (family support), DeAnna and Sean Dillon (fundraising and communications), and Sylvia Wheeler (advocacy), the chapter is excited to begin helping families throughout their area, and fundraising to support research to find a cure for […]
Cure SMA Arkansas Chapter Announced Read More »
The SMA community officially recognizes August as Spinal Muscular Atrophy Awareness Month, an effort that Cure SMA has been coordinating since 1996. Throughout August, the community works together to raise the general public’s awareness of SMA by hosting candlelight vigils, contacting their local legislature, holding fundraisers, coordinating MLB awareness games, and providing information to local
August is SMA Awareness Month! Read More »
On Monday, Biogen released an update detailing our community’s progress in gaining access to Spinraza. The latest update shows that significant progress has been made in making Spinraza broadly available to those impacted by SMA. The update includes: 233 sites have begun the process for administering Spinraza, 145 of those sites now actively dosing. More
Biogen Releases Update on Spinraza Access Read More »
The summer 2017 issue of Compass is now available online. As part of our most recent round of funding, we’ve announced ten grants totaling $1.03 million for basic research. This issue of Compass introduces our grantees and gives a brief overview of their projects, including how the research will be conducted and what impact the
Summer 2017 Issue of Compass Now Available Read More »
Today, members of the Senate are scheduled to begin voting on the Better Care Reconciliation Act (“Better Care Act”) of 2017. This is the Senate’s version of legislation modifying key parts of the Patient Protection and Affordable Care Act (ACA) in response to the American Health Care Act (AHCA) passed by the House of Representatives
Call to Action: Senate Expected to Vote on Healthcare Bill Today Read More »
Thank you to everyone who attended the 2017 Annual SMA Conference at Disney’s Contemporary Resort in Orlando, FL; it was truly a magical weekend of community, research and fun! While the final numbers are still being counted, we are happy to announce that, including on-site registration, there were around 2,100 attendees in total – our
2017 Annual SMA Conference Recap Read More »
Governor Eric Greitens today signed into law Missouri Senate Bill 50, instituting newborn screening for spinal muscular atrophy (SMA). The bill makes Missouri the first state in the country to screen all newborns for SMA. The legislation was sponsored by Representative Becky Ruth, a legislator with a longstanding commitment to expanding newborn screening efforts. Newborn
Missouri is the First State to Institute Newborn Screening for Spinal Muscular Atrophy Read More »
Today, as part of the Annual SMA Conference, we announced the launch of a new grassroots advocacy campaign to implement newborn screening for spinal muscular atrophy. Today’s kick-off event is a symposium on newborn screening advocacy, held as part of the Annual SMA Conference in Orlando, FL. One state, Missouri, has legislation pending instituting statewide
We’ve recently released an update to the SMA drug pipeline. This latest version includes: 19 active programs, including one approved therapy. 14 pharmaceutical partners. 5 programs in clinical trials. An ever-increasing breadth of potential treatment approaches to SMA. Effective Treatments for All Ages, Stages and Types of SMA Late last year, our community celebrated the
Summer 2017 Update to SMA Drug Pipeline is Released Read More »
The journal Neuromuscular Disorders has published a paper reporting on the findings of an international workgroup convened to update the Standard of Care (SOC) for SMA. Cure SMA provided funding support for this project, and Mary Schroth, medical director for Cure SMA, served on the workgroup. A SOC for SMA was first issued in 2007,
Cure SMA Funded Standard of Care Paper Published in Neuromuscular Disorders Journal Read More »
