Search Results: Living with SMA issues

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 […]

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Cure SMA to Meet with FDA for Critical Path Innovation Meeting

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We are excited to share with the SMA community that the U.S. Food and Drug Administration (FDA) has granted Cure SMA a Critical Path Innovation […]

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Genentech Announces 2-Year Risdiplam Data From SUNFISH and New Data From JEWELFISH in Infants, Children and Adults with SMA

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      Genentech, a member of the Roche Group, shared two-year data from Part 1 of its pivotal SUNFISH trial in people aged 2-25 […]

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Genentech’s Risdiplam Shows Significant Improvement in Survival and Motor Milestones in Infants With Type 1 SMA

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      Genentech, a member of the Roche Group, today presented 1-year data from FIREFISH Part 2, a pivotal global study evaluating risdiplam in infants aged […]

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Annual Cure SMA Community Update Survey Ready for Your Input

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Navigating the recent global health crisis, Coronavirus (COVID-19), has reinforced for us the importance of understanding what the SMA community is thinking, feeling, and experiencing. […]

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Genentech’s Risdiplam Meets Primary Endpoint in Pivotal FIREFISH Trial in Infants with Type 1 SMA

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Genentech, a member of the Roche Group, today announced positive topline results from the pivotal Part 2 of the FIREFISH study, evaluating risdiplam in infants […]

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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 […]

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Cure SMA Establishes an Adult Advisory Council

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We are happy to announce the establishment of the Adult Advisory Council. The Adult Advisory Council is a volunteer council that provides guidance, advice, and […]

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AveXis Issues Community Statement on Zolgensma Approval

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Dear SMA Community, We have exciting news to share with you — a major milestone has been reached in the fight against spinal muscular atrophy […]

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Cure SMA Launches Third Annual Community Survey to Address Important Issues in SMA Treatment

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For the past several years, we’ve been working to collect data and information on our community’s experiences, goals, hopes, and challenges. We know that the […]

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