Biogen Presents New Data at the American Academy of Neurology (AAN) Annual Meeting

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Biogen recently presented new data on Spinraza for the treatment of spinal muscular atrophy (SMA) during the 70th American Academy of Neurology (AAN) Annual Meeting, currently taking place from April 21-27 in Los Angeles, California. Both platform and poster presentations highlighted the benefits Spinraza provides for individuals with spinal muscular atrophy (SMA) across the age […]

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Spring 2018 Issue of Compass Now Available Online

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The Spring 2018 issue of Compass is now available online. The issue covers Cure SMA’s newborn screening efforts, including how NBS can help children diagnosed with SMA, the addition of SMA to the federal Recommended Uniform Screening Panel (RUSP), and state and federal advocacy efforts. For a condition like SMA to become part of routine

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Registration for the 2018 Annual SMA Conference Closes in Two Weeks

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The deadline to register for the 2018 Annual SMA Conference is just two weeks away! Registration will close on Friday, May 4th. Over 1,100 people have already registered – don’t miss your chance to engage with families, researchers and medical providers at largest SMA conference in the world!  Register  The conference will be filled with

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Genentech to Present New RG7916 Data at the American Academy of Neurology (AAN) Annual Meeting

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Genentech/Roche announced today that new data on its approved and investigational medicines for neurological conditions will be presented during the 70th American Academy of Neurology (AAN) Annual Meeting from April 21-27 in Los Angeles, California. The data will include investigational research from Genentech on drugs in development for spinal muscular atrophy (SMA). The SMA presentations

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Cure SMA Awards $150,000 Grant to Bakri Elsheikh, MD, Ohio State University Wexner Medical Center

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Cure SMA has awarded a $150,000 research grant to Bakri Elsheikh, MD, at the Ohio State University Wexner Medical Center, for his project, “Determine the motor unit response following SMN restoration in late-onset spinal muscular atrophy”. Dr. Elsheikh and his team will study the effects of Nusinersen in adult SMA patients. By doing so, they

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Cure SMA Database Findings Published in the Journal of Neuromuscular Diseases

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An important goal at Cure SMA is to collect data to better understand the SMA patient population, and then to report this data back to our industry partners, regulators, and payers. In collecting this data, we also hope to identify areas where additional care, advocacy, support, and research are needed. To help accomplish this goal,

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Novartis Agrees to Acquire AveXis

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AveXis, Inc. and Novartis announced today that they have entered into an agreement and plan of merger. Novartis will acquire AveXis in a transaction unanimously approved by the Boards of Directors of both companies. Novartis plans a smooth transition of AveXis operations and the integration of AveXis’ talented and dedicated employees into the Novartis organization

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SMA Newborn Screening Guidelines Published in Journal of Neuromuscular Diseases

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The recent decision of the federal Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) to recommend SMA for addition to the RUSP, as well as the implementation of SMA newborn screening (NBS) by several states, has ushered in the ability to identify infants with SMA before the onset of disease symptoms. To aid

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Cure SMA Welcomes Back AveXis as a 2018 National Premier Partner

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Cure SMA is excited to announce that AveXis is returning as a National Premier Partner for 2018. As part of their partnership, AveXis is generously supporting our Chapter Leader Summit, a full day of training and information-sharing for 70 chapter leaders from around the US, scheduled for April 2018. Many of the topics and training

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