Missouri is the First State to Institute Newborn Screening for Spinal Muscular Atrophy

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

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Cure SMA Launches Newborn Screening Grassroots Advocacy Campaign for Spinal Muscular Atrophy Newborn Screening

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

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Summer 2017 Update to SMA Drug Pipeline is Released

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

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Cure SMA Funded Standard of Care Paper Published in Neuromuscular Disorders Journal

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,

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The 2017 Annual SMA Conference is Here!

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

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Call-to-Action: Senate Health Care Bill Released and Vote Expected Next Week

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

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Launch of Phase 2 SMA Industry Collaboration Announced

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

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2017 Annual SMA Conference Booklet Now Posted

The 2017 Annual SMA Conference Booklet is now posted. The booklet includes: A complete schedule with information about the special events we’ve got planned including: the Family Friendly Research Poster Session, Saturday Night at Magic Kingdom Park and Sunday’s Newborn Screening Symposium Information on Saturday afternoon panels focusing on SMA drugs in development and drug

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