Biogen Provides SMA Community Update on DEVOTE Study

Leave a Comment / Clinical Trials, Front Page News /

Below we have provided an update from Biogen regarding the status of its DEVOTE clinical trial. For more information about SPINRAZA (nusinersen), visit https://www.curesma.org/spinraza/. ++++++++++++++++++++ Biogen’s DEVOTE study is designed to evaluate the safety, tolerability, and potential for even greater efficacy of SPINRAZA when administered at a higher dose than currently approved for the treatment […]

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Community Spotlight: Brian Chiorello

Leave a Comment / Community Awareness, Community Spotlight, Front Page News /

Brian Chiorello is a Principal Service Delivery Manager at a financial services company near where he lives in Orlando, FL. He resides there with his wife and 3-year-old daughter. In the early 1990s, Brian had plans to join the Navy, but things changed when a naval doctor suspected something was not quite right. “His suspicions

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Cure SMA Funds Over $9 Million in New and Ongoing Research in FY20

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During our past fiscal year—from July 1, 2019 to June 30, 2020—Cure SMA funded more than $9 million in new and ongoing research and care initiatives. This money will be used strategically to help accelerate research and ensure we are developing treatments and protocols for all types, ages, and stages of spinal muscular atrophy (SMA).

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Community Spotlight: The Hoskin Family

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High school sweethearts, Steven and Amy Hoskin, and their 19-month-old son, Grayson, reside outside Sacramento, CA. Steven describes them as a goofy bunch, always playing practical jokes on each other. Grayson is quick to acclimate to his family’s cheerful demeanor and loves to join in on the silliness. Grayson has been through a lot for

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Cure SMA, Novartis Publish Economic Burden of SMA Analysis in Journal of Market Access & Health Policy

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Recently, Cure SMA and colleagues at Novartis Gene Therapies published a manuscript titled, “Economic burden of spinal muscular atrophy: an analysis of claims data” in the Journal of Market Access & Health Policy. The purpose of the manuscript was to describe an analysis that was conducted measuring direct costs related to spinal muscular atrophy (SMA)

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Answering Questions about COVID-19 Vaccination and SMA

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To the full spinal muscular atrophy (SMA) community, we want you to know that Cure SMA is continuing to support you with information and resources related to the COVID-19 pandemic. The following frequently asked questions (FAQs) are designed to help address key concerns expressed by members of the SMA community about COVID-19 vaccination and provide

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Cure SMA Shares Perspective on COVID-19 Vaccination

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Dear SMA Community, Although this year has brought with it many challenges, the SMA community continues to demonstrate its strength and resilience. Cure SMA remains committed to bringing you the information, resources, and support you need as we continue to navigate the COVID-19 pandemic. Last week, the Advisory Committee on Immunization Practices (ACIP)—a U.S. Centers

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Biogen SMA Q4 2020 Community Statement

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Dear Members of the SMA Community, As we celebrate National Family Caregivers Month this November, Biogen acknowledges the vital role caregivers have in our society, including within our spinal muscular atrophy (SMA) community. We also recognize that caregivers need our support more than ever. Caregivers in the SMA community face an especially unique set of

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