Author name: Morgan Tuttle

7th Annual Hope on the Hill Congressional Dinner Achieves $1 Million Milestone

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This year’s 7th Annual “Hope on the Hill” Congressional Dinner will be held on Wednesday, November 29, bringing together families, government, and industry to mark the first-ever FDA approval of a treatment for SMA, and look forward to the next stages for our community. Through this event, we hope to build momentum in the Washington […]

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SMA Advocates Testify at Federal Newborn Screening Meeting

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On Wednesday, November 8, advocates testified at the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) in support of spinal muscular atrophy newborn screening efforts at the federal division of Health and Human Services. The advisory committee reviews conditions for addition to the Recommended Uniform Screening Panel (RUSP). The meeting included an update

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Biogen Issues Community Update on Spinraza

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Biogen has provided the following community statement on Spinraza.  Dear Members of the SMA community, As part of our commitment to the SMA community to provide ongoing and comprehensive communications about SPINRAZA® (nusinersen), we are pleased to share that the final results from ENDEAR, the Phase 3 study of SPINRAZA, were published in The New

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2017 World Muscle Society Congress Recap

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From October 3rd through October 7th, Cure SMA attended the 22nd International Annual Congress of the World Muscle Society (WMS) in Saint Malo, France. WMS is the premier annual congress on neuromuscular disorders, attended by established and young physicians, researchers, therapists and neuropathologists from all over the world. Cure SMA presented an overview of their

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New Clinical Trial Data Published in New England Journal of Medicine

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Two new papers of clinical trial data for spinal muscular atrophy were published today in the November issue of the New England Journal of Medicine (NEJM). NEJM is one of the most prestigious scientific journals in the US, and this dual publication reflects the scientific community’s increasing interest in and engagement with SMA research.  “Nusinersen

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Fall 2017 Issue of Compass Now Available

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The fall 2017 issue of Compass is now available online. This issue covers Phase II of the SMA Industry Collaboration, as well as highlights and results from the Patient Focused Drug Development Meeting with the FDA. Cure SMA Launches Phase II of the SMA Industry Collaboration The SMA Industry Collaboration is a multi-faceted partnership that

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Cure SMA Launches Benefit-Risk Survey to Address Important Issues in Treatment Access and Future Drug Approvals in SMA

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For the past several years, we have been working to bring your voices, experiences, challenges and hopes to inform regulatory authorities as key decisions are made on future therapies for SMA. Most recently, on April 18, 2017, the SMA community gathered for a Patient-Focused Drug Development (PFDD) Meeting with the FDA to do just that.

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Cure SMA Announces Over $5 Million in New Research and Care Funding

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Cure SMA is pleased to announce $5 million in new research funding over the next 12 months. This funding will be used strategically to help accelerate research and ensure we are developing treatments for all types, ages and stages of SMA. This funding will also be used to increase patient access to treatments and improved

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Registration is Now Open for the 2018 Annual SMA Conference!

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Registration is now open for the 2018 Annual SMA Conference! This year’s conference will be held at the Hilton Anatole Hotel in Dallas, TX, from Thursday, June 14 through Sunday, June 17, 2018. We are excited to bring the conference to a central location and hope you can join us! Located in the Market Center

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Cure SMA Meets in Utah with State and Federal Elected Officials to Support Newborn Screening

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On Tuesday, Cure SMA staff members and family advocates, and clinicians from the University of Utah, met with Senator Orrin Hatch (R-UT) to discuss newborn screening for spinal muscular atrophy. Senator Hatch was an original sponsor of the Newborn Screening Saves Lives Act of 2007, which established federal programs to support states in the implementation

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