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

May 8, 2019

Scholar Rock Issues Community Statement on the Initiation of a New Clinical Trial for SRK-015

Scholar Rock Issues Community Statement on the Initiation of a New Clinical Trial for SRK-015

The below statement is a community update from Scholar Rock on SRK-015. 

Dear SMA Community,

Scholar Rock is dedicated to developing novel medicines to improve the lives of individuals who have Spinal Muscular Atrophy (SMA). We want to thank the SMA community for your...

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Topics: Clinical Trials, Research, Front Page News

May 7, 2019

Genentech Presents Data from the Risdiplam Pivotal FIREFISH and SUNFISH Studies in Spinal Muscular Atrophy at the AAN Annual Meeting

Genentech Presents Data from the Risdiplam Pivotal FIREFISH and SUNFISH Studies in Spinal Muscular Atrophy at the AAN Annual Meeting

Genentech, a member of the Roche Group, recently announced new data at the 71st American Academy of Neurology (AAN) Annual Meeting from the dose-finding Part 1 of the pivotal...

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Topics: Clinical Trials, Research, Front Page News

May 6, 2019

AveXis Presents Data at AAN Annual Meeting Demonstrating Efficacy of Zolgensma in Broad Spectrum of Spinal Muscular Atrophy (SMA) Patients

AveXis Presents Data at AAN Annual Meeting Demonstrating Efficacy of Zolgensma in Broad Spectrum of Spinal Muscular Atrophy (SMA) Patients

AveXis, a Novartis company, recently announced interim data from ongoing trials of the investigational product...

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Topics: Clinical Trials, Research, Front Page News

May 6, 2019

Biogen Presents Data Affirming Longer-Term Safety and Durability of Treatment with SPINRAZA® at AAN Annual Meeting

Biogen Presents Data Affirming Longer-Term Safety and Durability of Treatment with SPINRAZA® at AAN Annual Meeting

Biogen today announced new data affirming the safety and durability of SPINRAZA (nusinersen) and highlighting its clinically meaningful benefits for...

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Topics: Clinical Trials, Research, Front Page News

May 2, 2019

Cure SMA and Genentech Partner to Provide Travel Support to Adults with SMA the Annual SMA Conference

Cure SMA and Genentech Partner to Provide Travel Support to Adults with SMA the Annual SMA Conference

Cure SMA is thrilled to announce that we will be extending travel scholarship opportunities to adults with SMA (18 and over) who are attending the 2019 Annual SMA Conference, taking place June 28-July 1, 2019 at Disneyland Resort in Anaheim, CA.

Thanks to a generous grant funded by...

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Topics: Support & Care, Conference, Front Page News

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