News

May 17, 2018

Cure SMA and Cytokinetics Announce National Platinum Partnership for 2018

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Topics: Support & Care, Events & Fundraising, Front Page News

May 15, 2018

Novartis Successfully Completes Acquisition of AveXis, Inc.

Novartis Successfully Completes Acquisition of AveXis, Inc.

Dear SMA Community, 

Following the announcement last month, we wanted to let you know that AveXis (the gene therapy company developing a new approach to treat SMA known as AVXS‐101) is

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Topics: Research, Front Page News

May 14, 2018

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

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

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 immunodeficiency (SCID).

Dubbed “Graham’s Bill” in honor of Graham Vollmer, the bill was largely...

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Topics: Our Impact, Advocacy, Front Page News

May 9, 2018

SMA Advocates Meet With House and Senate Offices

SMA Advocates Meet With House and Senate Offices

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 represented 24 states and DC. The purpose of the advocacy day was to advance life-changing opportunities for our community through SMA...

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Topics: Our Impact, Advocacy, Front Page News

May 8, 2018

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

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

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 Relevant Outcome Measure for Pediatric SMA Therapeutic Trials.”

Dr. Heatwole and his team are working to develop SMA-specific...

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Topics: Our Impact, Research, Front Page News

May 7, 2018

AveXis Issues Community Statement on the SPR1NT Trial

AveXis Issues Community Statement on the SPR1NT Trial

AveXis has provided the following community statement on the SPR1NT trial.

Dear SMA Community,

AveXis, the gene therapy company developing a new approach to treat SMA known as AVXS‐101, recently treated the first patient in a new study known as SPR1NT. SPR1NT is a...

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Topics: Clinical Trials, Front Page News

May 2, 2018

Uniting the SMA Community Through Local Programs and Support

Uniting the SMA Community Through Local Programs and Support

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 and said to look for support within the SMA community.

“After arriving home, we took the doc’s advice and opened up...

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Topics: Support & Care, About Us, Front Page News

May 1, 2018

Invitae Partners with Biogen to Offer Free Genetic Testing for SMA

Invitae Partners with Biogen to Offer Free Genetic Testing for SMA

Invitae Corporation recently announced that it will partner with Biogen to offer genetic testing at no charge to patients who may have...

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Topics: Support & Care, Research, Front Page News

April 30, 2018

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

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

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 Award in Child Neurology, in recognition of his achievements in treating children with muscular dystrophy (MD) and...

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Topics: Research, Front Page News

April 25, 2018

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

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 of efficacy were the time from birth to an event and video...

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Topics: Clinical Trials, Front Page News

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