News

June 7, 2018

Traveling with SMA

Traveling with SMA

As the summer season nears, many families will make plans to travel across the country to exciting destinations or to spend time with those they love. This is no different for those affected by SMA.

Although travel can present challenges, regardless of distance or method chosen, below...

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Topics: Community & Awareness, About SMA, Front Page News

June 1, 2018

Scholar Rock Announces Completion of Dosing of First Cohort in Phase 1 Clinical Trial of SRK-015

Scholar Rock Announces Completion of Dosing of First Cohort in Phase 1 Clinical Trial of SRK-015

Scholar Rock, a biotechnology company based in Boston, recently announced that it has completed dosing of the first cohort and is continuing...

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Topics: Clinical Trials, Research, Front Page News

May 31, 2018

Ohio Moves One Step Closer to SMA Newborn Screening

Ohio Moves One Step Closer to SMA Newborn Screening

The Ohio Newborn Screening Advisory Committee recommended that SMA be added to their state’s newborn screening panel. The recommendation now goes to the Ohio Department of Health for a rulemaking process. Once these rules are developed and approved, SMA will be officially added to the...

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Topics: Our Impact, Advocacy, Front Page News

May 30, 2018

Roche Releases Community Statement on Olesoxime Program

Roche Releases Community Statement on Olesoxime Program

Roche today provided the following community statement on olesoxime.

Dear members of the SMA Community,

We would like to provide you with an update about olesoxime, an investigational molecule in SMA.

Since we bought olesoxime from Trophos in 2015, we have had many...

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Topics: Clinical Trials, Research, Front Page News

May 29, 2018

Full Schedule of Workshops, Panels and Speakers for the 2018 Annual SMA Conference Announced

Full Schedule of Workshops, Panels and Speakers for the 2018 Annual SMA Conference Announced

Cure SMA has released the full schedule of workshops, panels and speakers for the 2018 Annual SMA Conference, to be held at the Hilton Anatole Hotel in Dallas, TX from June 14-17.

A detailed timeline with locations are included in the updated schedule, as well as several new workshops...

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Topics: Conference, Front Page News

May 24, 2018

Cure SMA Awards $150,000 Grant to Kathryn Swoboda, MD, Massachusetts General Hospital

Cure SMA Awards $150,000 Grant to Kathryn Swoboda, MD, Massachusetts General Hospital

Cure SMA has awarded a $150,000 research grant to Kathryn Swoboda, MD, at the Massachusetts General Hospital, for her project, "Clinical and pathologic correlations in patients with early infantile-onset SMA.”

SMA is caused by mutations in the SMN1 gene resulting in low levels of...

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Topics: Our Impact, Research, Front Page News

May 24, 2018

2018 Annual SMA Conference Booklet Released

2018 Annual SMA Conference Booklet Released

The 2018 Annual SMA Conference Booklet is now posted

The 112-page booklet includes information on workshops, special events and details of the 30th Anniversary SMA Conference, including:

1. A...

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Topics: Conference, Front Page News

May 22, 2018

Biogen Releases Community Statement on Spinraza Access and New Data

Biogen Releases Community Statement on Spinraza Access and New Data

Biogen has released the following community statement on Spinraza access and new research data.

Dear Members of the SMA community,

Thank you for your continued support, efforts to raise awareness about SMA, and participation in clinical trials and studies as we seek to expand...

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Topics: Clinical Trials, Research, Front Page News

May 21, 2018

2018 Family Friendly Poster Session Presenters Announced

2018 Family Friendly Poster Session Presenters Announced

The Family Friendly Research Poster Session allows for one-on-one interactions between families and researchers. Cure SMA has invited researchers, who are attending SMA Researcher Meeting, to present family friendly research posters. During the event, families are encouraged to rotate to the...

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Topics: Conference, Front Page News

May 17, 2018

Spring 2018 Issue of Directions Now Available

Spring 2018 Issue of Directions Now Available

The Spring 2018 issue of Directions is now available online. Check out our Support & Care publications page to download past issues of Directions and Cure SMA's Care...

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Topics: Support & Care, Our Impact, Front Page News

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