Author name: Morgan Tuttle

2017 SMA Researcher Meeting Summary: SMA Therapy Development

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The Annual SMA Researcher Meeting is the largest research meeting in the world specifically focused on SMA. This year we had a record setting 470 attendees. The goal of the meeting is to create open communication of early, unpublished data, accelerating the pace of research. The meeting also furthers research by building collaborations—including cross-disciplinary dialogue, […]

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2017 SMA Researcher Meeting Summary: Special Session on Fatigue and Muscle Weakness in SMA

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The Annual SMA Researcher Meeting is the largest research meeting in the world specifically focused on SMA. This year we had a record setting 470 attendees. The goal of the meeting is to create open communication of early, unpublished data, accelerating the pace of research. The meeting also furthers research by building collaborations—including cross-disciplinary dialogue,

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Cure SMA Receives Donation from the Bugenske Family

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Cure SMA recently received a donation of 14 special tomato feeder seats and 80 large sheepskin blankets from the Bugenske family. The feeder seats were immediately sent out, and helped Cure SMA fulfill the requests of each family on the equipment waiting list. The donation of large sheepskin blankets helps fund a new support program,

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August is SMA Awareness Month!

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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

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Biogen Releases Update on Spinraza Access

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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

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Call to Action: Senate Expected to Vote on Healthcare Bill Today

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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

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

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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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