News

July 11, 2018

Dr. John Kissel, Chair of Neurology at OSU Wexner Medical Center, Retires After 40 Years

Dr. John Kissel, Chair of Neurology at OSU Wexner Medical Center, Retires After 40 Years

Dr. John Kissel has treated patients with neuromuscular disorders from all over the United States. He specializes in spinal muscular atrophy and has been instrumental in his practice at one of the country's leading centers in neuromuscular medicine.

Dr. Kissel’s interest in SMA...

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Topics: Support & Care, Research, Front Page News

July 10, 2018

Roche Releases Community Update on Risdiplam

Roche Releases Community Update on Risdiplam

The following is a community update from Genentech/Roche on the risdiplam (RG7916) program.

Dear SMA advocacy community,

As requested, we are very pleased to share an update on the RG7916 program.

We would also like to extend a special thanks to study participants and...

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Topics: Clinical Trials, Research, Front Page News

July 10, 2018

Cure SMA Awards $300,000 Grant to Umrao Monani, PhD, Columbia University

Cure SMA Awards $300,000 Grant to Umrao Monani, PhD, Columbia University

Cure SMA has awarded a $300,000 preclinical drug discovery grant to Umrao Monani, PhD, at Columbia University, for his project, " Restoring function at the NMJ: A novel means to treat SMA.”

A drug directed at SMN enhancement, Spinraza, has recently become available but is...

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Topics: Our Impact, Research, Front Page News

July 3, 2018

HHS Secretary, Alex Azar, Recommends Nationwide Newborn Screening for SMA

HHS Secretary, Alex Azar, Recommends Nationwide Newborn Screening for SMA

Health and Human Services Secretary Alex Azar today approved the recommendation that newborn screening for spinal muscular atrophy be implemented nationwide. This recommendation was issued on February 8, 2018, by the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC)....

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Topics: Our Impact, Advocacy, Front Page News

June 28, 2018

SMA Newborn Screening Moves Forward in New Jersey

SMA Newborn Screening Moves Forward in New Jersey

Earlier this month, the New Jersey State Senate Committee on Health, Human Services, and Senior Citizens unanimously approved S. 974. Introduced by Senator Troy Singleton, the bill would add SMA to the New Jersey’s...

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Topics: Our Impact, Advocacy, Front Page News

June 25, 2018

Thank You For a Wonderful 2018 Annual SMA Conference!

Thank You For a Wonderful 2018 Annual SMA Conference!

Thank you to everyone who attended the 2018 Annual SMA Conference at the Hilton Anatole Hotel in Dallas, Texas! It was an impactful weekend of community, research and fun.

While the final numbers are still being counted, we are happy to announce that, including on-site registration,...

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Topics: Community & Awareness, Conference, Front Page News

June 25, 2018

Summer 2018 Issue of Compass Now Available

Summer 2018 Issue of Compass Now Available

The summer 2018 issue of Compass is now available online.

As part of our most recent round of funding, we’ve announced ten grants totaling $1,325,000 million for basic research.

This issue of Compass...

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Topics: Our Impact, Research, Front Page News

June 19, 2018

PTC Therapeutics Announces Risdiplam (RG7916) is Well Tolerated at All Dose Levels With No Drug-Related Safety Findings

On Saturday, PTC Therapeutics, Inc. announced the presentation of updated interim clinical data from Part 1 of the FIREFISH study investigating risdiplam (RG7916) in babies with Type 1 Spinal Muscular Atrophy...

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Topics: Clinical Trials, Research, Front Page News

June 16, 2018

Cytokinetics Presents Data from the Phase 2 Clinical Trial of Reldesemtiv (CK-2127107) in Patients with SMA at the 2018 Annual SMA Conference

Cytokinetics Presents Data from the Phase 2 Clinical Trial of Reldesemtiv (CK-2127107) in Patients with SMA at the 2018 Annual SMA Conference

Today, Cytokinetics announced data from the Phase 2 clinical study of reldesemtiv in patients with SMA, presented in an oral presentation by...

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Topics: Clinical Trials, Research, Front Page News

June 14, 2018

Biogen to Present New Data at the 2018 Annual SMA Conference

Biogen to Present New Data at the 2018 Annual SMA Conference

Yesterday, Biogen announced it will present data from its SPINRAZA clinical development program –the largest of its kind, with more than six years of...

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Topics: Conference, Research, Front Page News

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