News

November 1, 2017

New Clinical Trial Data Published in New England Journal of Medicine

Two new papers of clinical trial data for spinal muscular atrophy were published today in the November issue of the New England Journal of Medicine (NEJM). NEJM is one of the most prestigious scientific journals in the US, and this dual publication reflects the scientific community's increasing interest in and engagement with SMA...

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Topics: Clinical Trials, Front Page News

October 25, 2017

Fall 2017 Issue of Compass Now Available

Fall 2017 Issue of Compass Now Available

The fall 2017 issue of Compass is now available online.

This issue covers Phase II of the SMA Industry Collaboration, as well as highlights and results from the Patient Focused Drug Development Meeting...

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Topics: Our Impact, Research, Front Page News

October 24, 2017

Cure SMA Launches Benefit-Risk Survey to Address Important Issues in Treatment Access and Future Drug Approvals in SMA

Cure SMA Launches Benefit-Risk Survey to Address Important Issues in Treatment Access and Future Drug Approvals in SMA

For the past several years, we have been working to bring your voices, experiences, challenges and hopes to inform regulatory authorities as key decisions are made on future therapies for SMA. Most recently, on April 18, 2017, the SMA community gathered for a Patient-Focused Drug Development...

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Topics: Community & Awareness, Our Impact, Front Page News

October 20, 2017

Cure SMA Announces Over $5 Million in New Research and Care Funding

Cure SMA Announces Over $5 Million in New Research and Care Funding

Cure SMA is pleased to announce $5 million in new research funding over the next 12 months. This funding will be used strategically to help accelerate research and ensure we are developing treatments for all types, ages and stages of SMA. This funding will also be used to increase patient...

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Topics: Support & Care, Research, Front Page News

October 18, 2017

Registration is Now Open for the 2018 Annual SMA Conference!

Registration is Now Open for the 2018 Annual SMA Conference!

Registration is now open for the 2018 Annual SMA Conference! This year’s conference will be held at the Hilton Anatole Hotel in Dallas, TX, from Thursday, June 14 through Sunday, June 17, 2018. We are excited to bring the conference to a central location and hope you can join...

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Topics: Conference, Front Page News

October 13, 2017

Cure SMA Meets in Utah with State and Federal Elected Officials to Support Newborn Screening

Cure SMA Meets in Utah with State and Federal Elected Officials to Support Newborn Screening

On Tuesday, Cure SMA staff members and family advocates, and clinicians from the University of Utah, met with Senator Orrin Hatch (R-UT) to discuss newborn screening for spinal muscular atrophy. Senator Hatch was an original sponsor of the Newborn Screening Saves Lives Act of 2007, which...

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Topics: Our Impact, Advocacy, Front Page News

October 12, 2017

Genentech/Roche Releases Clinical Trial Update for SUNFISH (RG7916)

Genentech/Roche Releases Clinical Trial Update for SUNFISH (RG7916)

Genentech/Roche has provided the below community statement with clinical trial updates for SUNFISH (Type 2/3). The first patient is now enrolled in SUNFISH, as the trial advances to part two, which is designed to be a pivotal marketing registration trial. 

Dear SMA...

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Topics: Clinical Trials, Research, Front Page News

September 29, 2017

Recording of the September Webinar on Spinraza Updates Now Available

A recording of last week’s webinar updating the community on Spinraza access and administration sites is now available online. A PDF of the webinar presentation is also available for

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Topics: Community & Awareness, Support & Care, Front Page News

September 29, 2017

AveXis Announces Plan to Initiate Pivotal Trial of AVXS-101 in SMA Type 1 Using Product from New GMP Commercial Process

AveXis Announces Plan to Initiate Pivotal Trial of AVXS-101 in SMA Type 1 Using Product from New GMP Commercial Process

AveXis, Inc., a clinical-stage gene therapy company developing treatments for patients suffering from rare and life-threatening neurological genetic diseases, today announced...

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Topics: Clinical Trials, Front Page News

September 28, 2017

Cure SMA Contributes Article to a Special Issue of the Journal Gene Therapy

To celebrate the FDA approval of Spinraza, Cure SMA contributed an article to the September special issue of the journal Gene Therapy. The issue , “Spinraza and Advanced Therapies: a stakeholder special,” covers a variety of perspectives and includes comments and review papers from SMA research funders, people affected by SMA,...

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Topics: Our Impact, Research, Front Page News

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