News

September 20, 2017

Newborn Screening Advocacy Update

Newborn Screening Advocacy Update

At our Annual SMA Conference in July, we announced a grassroots campaign to implement newborn screening for SMA in all 50 states. We know that newborn screening and early treatment is the best chance we have to change the course of SMA for the next generation and beyond. We challenged our...

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Topics: Community & Awareness, Advocacy, Front Page News

September 19, 2017

Novartis Releases Update on LMI070 (Branaplam) Clinical Trial

Novartis Releases Update on LMI070 (Branaplam) Clinical Trial

Novartis has released the following update for the LMI070 (branaplam) clinical trial, on behalf of the program team. 

Dear SMA community,

For years, our researchers have been working hard to develop a new treatment for SMA. One promising compound in our neuroscience...

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Topics: Clinical Trials, Research, Front Page News

September 18, 2017

Applications for Cure SMA Medical Advisory Council Due October 15th

Cure SMA is expanding its role in spinal muscular atrophy medical affairs at the national level through its Medical Advisory Council (MAC). The MAC sets the agenda for proactive, creative, and collaborative leadership on issues that improve the quality of medical care for those affected by SMA.

The focus of the Council is to build on...

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Topics: Support & Care, Front Page News

September 15, 2017

Genentech/Roche Releases Clinical Trial Update for RG7916

Genentech/Roche Releases Clinical Trial Update for RG7916

Genentech/Roche recently provided the following community statement with clinical trial updates for SUNFISH (Type 2/3). The SUNFISH trial is advancing to part two, which is designed to be a pivotal, marketing registration trial. 

Dear SMA Community,

We are focused on...

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Topics: Clinical Trials, Front Page News

September 11, 2017

2017 SMA Awareness Month Recap

2017 SMA Awareness Month Recap

The SMA community celebrated an impactful and advocacy-driven Awareness Month through a number of ways this August. Whether hosting candlelight vigils, meeting with state and local legislatures, holding fundraisers, coordinating MLB awareness games, and more, the community worked together to...

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Topics: Community & Awareness, Front Page News

September 6, 2017

Cure SMA to Host Webinar Updating the Community on Spinraza Access

Cure SMA to Host Webinar Updating the Community on Spinraza Access

On Tuesday, September 19, at 12:00pm CST (10:00am PST/11:00am MST/1:00pm EST), Cure SMA will hold a webinar updating the community on the status of Spinraza access. Among the topics covered will be:

  • The current status of dosing in states across the...

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Topics: Community & Awareness, Front Page News

August 29, 2017

2017 SMA Researcher Meeting Summary: Clinical Research Studies for SMA

2017 SMA Researcher Meeting Summary: Clinical Research Studies for SMA

The Annual SMA Researcher Meeting is the largest research meeting in the world specifically focused on SMA. This year we had a record setting 470 attendees. The goal of the meeting is to create open communication of early, unpublished data, accelerating the pace of research. The meeting also...

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Topics: Conference, Research, Front Page News

August 24, 2017

2017 Researcher Meeting Summary: Identification of Candidate Therapeutic Targets and Disease Modifiers

2017 Researcher Meeting Summary: Identification of Candidate Therapeutic Targets and Disease Modifiers

The Annual SMA Researcher Meeting is the largest research meeting in the world specifically focused on SMA. This year we had a record setting 470 attendees. The goal of the meeting is to create open communication of early, unpublished data, accelerating the pace of research. The meeting also...

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Topics: Conference, Research, Front Page News

August 23, 2017

Victor Dubowitz Honored at 2017 Researcher Meeting for Early Contributions to the SMA Field

Victor Dubowitz Honored at 2017 Researcher Meeting for Early Contributions to the SMA Field

During the 2017 SMA Researcher Meeting, we honored one of our 2017 conference champions, Dr. Victor Dubowitz. Dr. Dubowitz’s early contributions to the SMA field were seminal and have been critical to our understanding of SMA pathology and clinical presentation.

Dr. Dubowitz,...

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Topics: Conference, Research, Front Page News

August 22, 2017

SMA Documentary Premieres at 2017 Rhode Island International Film Festival

SMA Documentary Premieres at 2017 Rhode Island International Film Festival

Life & Atrophy, a film about SMA, premiered at the Rhode Island International Film Festival on Saturday, August 12th. It was directed, produced, edited and photographed by Gareth Burghes.

The film follows the McIntosh’s, whose son Miles has SMA Type II, as they navigate the...

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Topics: Community & Awareness, Front Page News

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