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 »
The 2017 Annual SMA Conference, now in its 29th year, is set to kick off on June 29 and continue into a weekend full of programs and events that bring families, researchers and healthcare professionals together. This year’s conference has already surpassed the records of previous years. We’re expecting over 2,000 attendees, including almost 450
The 2017 Annual SMA Conference is Here! Read More »
Yesterday, members of the Senate released draft text of their much awaited legislation called the Better Care Reconciliation Act (“Better Care Act”) of 2017. As you’ll recall from previous updates (links here and here), the Senate has been working to put together its own legislation to modify key parts of the Patient Protection and Affordable
Call-to-Action: Senate Health Care Bill Released and Vote Expected Next Week Read More »
The US Senate is currently working on legislation to modify the Affordable Care Act. Though details of the Senate’s plan are not yet available, legislation could be released as early as Thursday or Friday of this week. As Senators consider various options it is important that they keep in mind the needs of people such
Cure SMA Update – Senate Healthcare Bill Read More »
Cure SMA is pleased to announce the launch of Phase 2 of our SMA Industry Collaboration. The SMA Industry Collaboration is a multi-faceted partnership that brings together pharmaceutical companies, Cure SMA, and other nonprofit organizations, to share information, ideas, and data. The SMA Industry Collaboration works together to address scientific, clinical and regulatory topics that
Launch of Phase 2 SMA Industry Collaboration Announced Read More »
