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

June 12, 2018

The 2018 Annual SMA Conference is Here!

The 2018 Annual SMA Conference is Here!

The 2018 Annual SMA Conference, now in its 30th year, is set to kick off on June 14 and continue into a weekend full of programs and events that bring families, researchers and healthcare professionals together.

This year’s conference will be the largest in the Midwest to date....

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Topics: Conference, Front Page News

June 12, 2018

Thank You to Our 2018 Annual SMA Conference Sponsors!

Thank you to the following sponsors who are generously supporting the 2018 Annual SMA Conference. This one-of-a-kind event would not be possible without your support!

For more information about the below companies, please visit our conference sponsor...

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Topics: Conference, Front Page News

June 11, 2018

Thank You to Our 2018 Annual SMA Conference Exhibitors!

Thank you to the following exhibitors who are generously supporting the 2018 Annual SMA Conference. This incredible and unique event would not be possible without your support! 

For more information on any of the below companies, please visit our

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Topics: Conference, Front Page News

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