Advocacy

Help Us Shape the Future Together, and Reach our Goal of $750,000

November 28, 2016
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This has been an historic year for the SMA community. On October 28, our pharmaceutical partners at Biogen and Ionis announced that their New Drug […]

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Cure SMA Launches Insurance Coverage and Payment Policy Project

November 16, 2016
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Earlier this year, Cure SMA initiated an insurance coverage and payment policy project, in partnership with District Policy Group. The goal of this project is […]

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Cure SMA Joins SMA Europe and TREAT-NMD for Meeting with EMA Regulators

November 10, 2016
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Cure SMA will be participating in a one-day workshop with The European Medicines Agency (EMA—the European equivalent of the FDA), SMA Europe and TREAT-NMD to […]

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Cure SMA to Host Webinar on the New Drug Application Process

November 9, 2016
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On Tuesday, December 6, Cure SMA will be hosting a one-hour webinar on the New Drug Application (NDA) process. The webinar will be held at […]

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6th Annual Congressional Dinner Furthers SMA Advocacy Work

October 27, 2016
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This year’s 6th Annual “Hope on the Hill” Congressional Dinner will be held on Tuesday, November 29, bringing together families, government, and industry for an […]

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SMA Community is Granted a Patient Focused Drug Development Meeting with the FDA

October 19, 2016
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Cure SMA is excited to announce that the SMA community has been granted a Patient Focused Drug Development Meeting with the FDA. At the Patient […]

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Cure SMA Announces Newborn Screening Initiative in Partnership with MDA

September 27, 2016
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Twice this year, Cure SMA has had the opportunity to testify before the federal Advisory Committee on Heritable Disorders on the need for newborn screening […]

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We’re Partnering With The Mighty!

September 2, 2016
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We’re thrilled to announce a new partnership that will bring Cure SMA’s resources in front of The Mighty‘s wide-reaching readership. We will now have a […]

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Cure SMA Plans a Series of Educational Modules for the SMA Community

August 18, 2016
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With the recent news that Biogen and Ionis will submit nusinersen for FDA approval—along with other recent developments, including the breakthrough designation for AveXis’s gene […]

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Cure SMA-Funded Researcher Chris Lorson Publishes Paper in Molecular Therapy

August 17, 2016
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Dr. Chris Lorson and his colleagues have published a paper, “Optimization of Morpholino Antisense Oligonucleotides Targeting the Intronic Repressor Element1 in Spinal Muscular Atrophy,” in […]

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