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Indiana Becomes Fourth State to Adopt Newborn Screening for Spinal Muscular Atrophy

May 14, 2018
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On Friday, Governor Eric Holcomb held a signing ceremony for Indiana House Bill 1017, adopting newborn screening for spinal muscular atrophy (SMA) and severe combined […]

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SMA Advocates Meet With House and Senate Offices

May 9, 2018
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On Thursday, April 26, Cure SMA traveled with more than 70 spinal muscular atrophy advocates to Washington DC to meet with congressional offices. The advocates […]

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Cure SMA Awards $150,000 Grant to Chad Heatwole, MD, University of Rochester

May 8, 2018
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Cure SMA has awarded a $150,000 research grant to Chad Heatwole, MD, at the University of Rochester, for his project, ” Development of a Clinically […]

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Uniting the SMA Community Through Local Programs and Support

May 2, 2018
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After her son William’s SMA type 2 diagnosis in April 2001, Heidi Johnson’s doctor immediately showed her the Cure SMA (then Families of SMA) website […]

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Invitae Partners with Biogen to Offer Free Genetic Testing for SMA

May 1, 2018
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Invitae Corporation recently announced that it will partner with Biogen to offer genetic testing at no charge to patients who may have spinal muscular atrophy […]

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Dr. Richard Finkel, M.D., Honored with the American Academy of Neurology’s 2018 Sidney Carter Award in Child Neurology

April 30, 2018
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Richard Finkel, M.D., the chief of neurology at Nemours Children’s Hospital in Orlando, Fla., was honored with the American Academy of Neurology’s 2018 Sidney Carter […]

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AveXis to Present Phase 1 Data at the 70th American Academy of Neurology Annual Meeting

April 25, 2018
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The Phase 1, open-label, dose-escalation trial was designed to evaluate the safety and tolerability of AVXS-101 in patients with SMA Type 1. The key measures […]

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SMA Community Leaders to Gather in Washington DC to Network, Learn and Advocate

April 24, 2018
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On Thursday, April 26, more than 70 chapter leaders, event organizers and board/committee members, representing 24 states and DC, will gather in Washington DC for […]

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The Discovery of Spinraza

April 24, 2018
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SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein—called survival motor […]

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There is Still Time to Complete Cure SMA’s 2018 Community Survey

April 23, 2018
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Dear Members of the SMA Community, For the past several years, we’ve been working to collect data and information on our community’s experiences, goals, hopes, […]

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