Cure SMA and Biogen to Co-Host Webinar on DEVOTE Clinical Trial – Register Today!

Leave a Comment / Clinical Trials, Front Page News, Research /

On Tuesday, February 4th, at 11am CST (9am PST/10am MST/12pm EST) Biogen and Cure SMA will co-host a webinar for the SMA community. During the webinar, you’ll hear from Biogen about the latest information on its SPINRAZA clinical trial, DEVOTE, a Phase 2/3 randomized, controlled dose-escalating study with infantile and later-onset SMA of all ages, […]

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Community Spotlight: Scurria Family

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John and Krista Scurria, of Baton Rouge, La., believe in a parent’s intuition. Krista first became worried about the development of her oldest child, Josh, while she was still pregnant with him. But doctors disregarded her concern, attributing it to first-time parent naiveté. However, she and John continued to worry after Josh was born, and

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A Look Back at 2019: Cure SMA Research Year-in-Review

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During our last fiscal year—July 1, 2018, to June 30, 2019—Cure SMA funded more than $7 million in new research and ongoing research. The resources will help accelerate research and ensure we are developing treatments for all types, ages, and stages of SMA. The areas funded include: Basic research, with a focus on funding approaches

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Cure SMA Awards Grants to Four States to Expediate the Implementation of SMA Newborn Screening

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With an incidence of approximately one in 11,000, more than 360 infants will be born annually with spinal muscular atrophy (SMA). Newborn screening can help to pre-empt irreversible motor neuron loss, increase prompt intervention, and eliminate long diagnostic delays. The impact of early diagnosis has been demonstrated through several studies that reinforce the importance of

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Biogen Issues Q4 2019 Community Statement on Spinraza

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Dear Members of the SMA Community, As part of Biogen’s ongoing commitment to individuals living with, and caregivers affected by, spinal muscular atrophy (SMA), we are pleased to announce updates to our SPINRAZA® (nusinersen) clinical development program – an extensive clinical data set in the treatment of SMA to date that includes more than 300

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9th Annual “Hope on the Hill” Congressional Dinner Featured Dr. Francis Collins, National Institutes of Health (NIH)

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The 9th Annual “Hope on the Hill” Congressional Dinner was held on Tuesday, December 3, 2019 at The Willard Hotel in Washington, DC. More than 180 people from the SMA community – including families, government officials, and industry partners – attended the dinner, which raised $195,000 to fund advocacy efforts, research, and family support services.

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