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Community Statement from Genentech: FDA Grants Priority Review to Risdiplam for Spinal Muscular Atrophy

November 25, 2019
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Genentech, a member of the Roche Group, today announced that the U.S. Food and Drug Administration (FDA) has accepted the New Drug Application (NDA) and […]

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SMA Concordance Among Siblings Published in the Journal of Neuromuscular Diseases

November 21, 2019
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Earlier this month, an article was published in the Journal of Neuromuscular Diseases titled, “Spinal Muscular Atrophy (SMA) Subtype Concordance in Siblings: Findings from the […]

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Caring for the Caregiver by Brynne Willis

November 20, 2019
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Many consider the deepest expression of love is being a caregiver. Providing for someone’s needs is incredibly special and rewarding to the one who is […]

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Scholar Rock Reports Preliminary Pharmacokinetic and Pharmacodynamic Data from TOPAZ Phase 2 Trial of SRK-015 for the Treatment of Patients with Spinal Muscular Atrophy

November 19, 2019
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Scholar Rock today announced preliminary pharmacokinetic (PK) and pharmacodynamic (PD) results from the TOPAZ Phase 2 proof-of-concept trial of SRK-015 for the treatment of patients […]

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Team Cure SMA Raises Over $45,000 in the New York City Marathon

November 18, 2019
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Fifteen Team Cure SMA runners successfully raised over $45,000 for Cure SMA while running in the 2019 TCS New York City Marathon on November 3, […]

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Genentech’s Risdiplam Meets Primary Endpoint in Pivotal SUNFISH Trial in People With Type 2 or 3 Spinal Muscular Atrophy

November 11, 2019
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Genentech, a member of the Roche Group, today announced positive data from the pivotal Part 2 of the SUNFISH study evaluating risdiplam in people aged […]

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A Tiny Warrior: Winnie Stanley’s Story

November 6, 2019
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This guest post is written by April Leiffer Henry If you ask 4-year-old Winnie Stanley what she wants to be when she grows up, she’ll […]

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Community Spotlight: Angela Wrigglesworth

October 31, 2019
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October has been National Disability Employment Awareness Month, and throughout the month, you have heard stories about adults in the workforce who live with SMA. […]

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AveXis Issues Community Statement on AVXS-101 Clinical Hold

October 31, 2019
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Dear SMA community, Today, we announced an AVXS-101 intrathecal study update. In the update, we shared that the United States Food & Drug Administration (FDA) […]

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Novartis Announces AVXS-101 Intrathecal Study Update

October 30, 2019
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The below statement is a press release from Novartis and AveXis. Novartis today announced the United States Food & Drug Administration (FDA) placed a partial hold on […]

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