News

May 21, 2019

Cure SMA Awards $150,000 Grant to Krysta Engel, PhD, University of Colorado

Cure SMA Awards $150,000 Grant to Krysta Engel, PhD, University of Colorado

Audrey Lewis founded Families of SMA, now Cure SMA, 34 years ago. Audrey recognized early on the importance of attracting new and talented researchers to SMA, with the hope that they would commit their careers to developing a treatment and cure for SMA.

Cure SMA honors Audrey’s...

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Topics: Our Impact, Research, Front Page News

May 17, 2019

Cure SMA Attends the 71st Annual American Academy of Neurology (AAN) Meeting in Philadelphia

The American Academy of Neurology (AAN) 2019 Annual meeting wrapped up in Philadelphia, Pennsylvania on May 10th, 2019. The AAN Annual meeting is one of the world’s largest professional meeting of neurologists on cutting-edge science, research, and clinical updates. Over 14,000 neurology professionals and meeting attendees were in...

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Topics: Our Impact, Research, Front Page News

May 16, 2019

Novartis Issues Community Statement on Branaplam Clinical Study

Novartis Issues Community Statement on Branaplam Clinical Study

Dear SMA Community,

We are writing to inform you that enrollment to the ongoing branaplam clinical study is now closed.

Branaplam is currently being assessed for safety and efficacy in a Phase 1/2 clinical study in Type 1 infantile-onset SMA. We are pleased to announce...

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Topics: Clinical Trials, Research, Front Page News

May 16, 2019

Team Biogen Runs from Chicago to Madison, Raising Over $12,000 for Cure SMA

Team Biogen Runs from Chicago to Madison, Raising Over $12,000 for Cure SMA

On Friday, May 17th to Saturday, May 18th, Team Biogen will hit the ground running in the 2019 Reebok Ragnar Great Midwest, a 14-person relay race. The team's goal is to raise funds and awareness for the SMA community.

Team Biogen has already raised over $12,000 for Team Cure SMA while...

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Topics: Events & Fundraising, Front Page News

May 15, 2019

Biogen’s SPINRAZA® (nusinersen) Receives Positive Recommendation from NICE for Funding in the United Kingdom for the Treatment of Infants, Children and Adults with Spinal Muscular Atrophy

Biogen’s SPINRAZA® (nusinersen) Receives Positive Recommendation from NICE for Funding in the United Kingdom for the Treatment of Infants, Children and Adults with Spinal Muscular Atrophy

Biogen Inc. today announced that The National Institute for Health and Care Excellence (NICE) in the United Kingdom has recommended funding for SPINRAZA...

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Topics: Research, Front Page News

May 14, 2019

Cure SMA Awards $150,000 Grant to Sibylle Jablonka, PhD, University of Würzburg, Germany

Cure SMA Awards $150,000 Grant to Sibylle Jablonka, PhD, University of Würzburg, Germany

Cure SMA has awarded a $150,000 research grant to Sibylle Jablonka, PhD at University of Wurzburg, for her project, “Modulation of calcium channels in mouse models for spinal muscular atrophy (SMA)”.

Dysregulated cellular mechanisms, such as neurotransmission, are complex...

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Topics: Our Impact, Research, Front Page News

May 14, 2019

Cure SMA Publishes Journal Article on Benefit-Risk Preferences in SMA

Your voice has been heard! 

Cure SMA has published a paper, titled, Evaluating Benefit-Risk Decision-Making in Spinal Muscular Atrophy: A First-Ever Study to Assess Risk Tolerance in the SMA Patient Community in the Journal of...

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Topics: Support & Care, Research, Front Page News

May 13, 2019

Spring 2019 SMA Newborn Screening Update

Spring 2019 SMA Newborn Screening Update

We are thrilled to announce that Missouri, Pennsylvania and Vermont have now implemented permanent statewide SMA newborn screening, making 6 states that are now permanently screening statewide for SMA. Several other states have adopted SMA newborn screening and have moved one step closer to...

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Topics: Our Impact, Advocacy, Front Page News

May 9, 2019

Team Cure SMA to Participate in Vermont City Marathon

Team Cure SMA to Participate in Vermont City Marathon

On Sunday, May 26th, Regina Philipps will participate in the Vermont City Marathon and has already raised over $13,000 for Team Cure SMA while training.

As an avid runner, Regina joined...

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Topics: Community & Awareness, Events & Fundraising, Front Page News

May 8, 2019

Dr. Arthur Burghes Named 2019 Distinguished Scholar

Dr. Arthur Burghes Named 2019 Distinguished Scholar

The Ohio State University recently announced the 2019 honorees of the Distinguished Scholar Award. The award, established in 1978, recognizes exceptional scholarly accomplishments by senior professors...

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Topics: Research, Front Page News

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