News

April 24, 2018

SMA Community Leaders to Gather in Washington DC to Network, Learn and Advocate

SMA Community Leaders to Gather in Washington DC to Network, Learn and Advocate

On Thursday, April 26, more than 70 chapter leaders, event organizers and board/committee members, representing 24 states and DC, will gather in Washington DC for two days of networking, learning, and advocacy. The activities include a day of advocacy on Capitol Hill, meeting with House and...

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Topics: Community & Awareness, Advocacy, Front Page News

April 24, 2018

The Discovery of Spinraza

The Discovery of Spinraza

SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein—called survival motor neuron protein or SMN protein—that is critical to the function of the nerves that control our...

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Topics: Our Impact, Research, Front Page News

April 23, 2018

There is Still Time to Complete Cure SMA's 2018 Community Survey

There is Still Time to Complete Cure SMA's 2018 Community Survey

Dear Members of the SMA Community,

For the past several years, we’ve been working to collect data and information on our community’s experiences, goals, hopes, and challenges. We know that the voice of our community is powerful. By sharing our stories, we can communicate...

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Topics: Our Impact, Research, Front Page News

April 23, 2018

Biogen Presents New Data at the American Academy of Neurology (AAN) Annual Meeting

Biogen Presents New Data at the American Academy of Neurology (AAN) Annual Meeting

Biogen recently presented new data on Spinraza for the treatment of spinal muscular atrophy (SMA) during the 70th American Academy of Neurology (AAN) Annual Meeting, currently taking place from April 21-27 in Los Angeles, California. Both platform and poster presentations highlighted the...

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Topics: Clinical Trials, Research, Front Page News

April 18, 2018

Spring 2018 Issue of Compass Now Available Online

Spring 2018 Issue of Compass Now Available Online

The Spring 2018 issue of Compass is now available online. The issue covers Cure SMA’s newborn screening efforts, including how NBS can help children diagnosed with SMA, the addition of SMA to the federal Recommended...

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Topics: Research, Advocacy, Front Page News

April 17, 2018

Registration for the 2018 Annual SMA Conference Closes in Two Weeks

Registration for the 2018 Annual SMA Conference Closes in Two Weeks

The deadline to register for the 2018 Annual SMA Conference is just two weeks away! Registration will close on Friday, May 4th. Over 1,100 people have already registered – don’t miss your chance to engage with families, researchers and medical providers at largest...

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Topics: Support & Care, Conference, Front Page News

April 16, 2018

Genentech to Present New RG7916 Data at the American Academy of Neurology (AAN) Annual Meeting

Genentech to Present New RG7916 Data at the American Academy of Neurology (AAN) Annual Meeting

Genentech/Roche announced today that new data on its approved and investigational medicines for neurological conditions will be presented during the 70th American Academy of Neurology (AAN) Annual Meeting from April 21-27 in Los Angeles, California. The data will include investigational...

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Topics: Clinical Trials, Research, Front Page News

April 13, 2018

Cure SMA Awards $150,000 Grant to Bakri Elsheikh, MD, Ohio State University Wexner Medical Center

Cure SMA Awards $150,000 Grant to Bakri Elsheikh, MD, Ohio State University Wexner Medical Center

Cure SMA has awarded a $150,000 research grant to Bakri Elsheikh, MD, at the Ohio State University Wexner Medical Center, for his project, "Determine the motor unit response following SMN restoration in late-onset spinal muscular atrophy”.

Dr. Elsheikh and his team will study...

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Topics: Our Impact, Research, Front Page News

April 9, 2018

Cure SMA Database Findings Published in the Journal of Neuromuscular Diseases

Cure SMA Database Findings Published in the Journal of Neuromuscular Diseases

An important goal at Cure SMA is to collect data to better understand the SMA patient population, and then to report this data back to our industry partners, regulators, and payers. In collecting this data, we also hope to identify areas where additional care, advocacy, support, and research...

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Topics: Our Impact, Research, Front Page News

April 9, 2018

Novartis Agrees to Acquire AveXis

Novartis Agrees to Acquire AveXis

AveXis, Inc. and Novartis announced today that they have entered into an agreement and plan of merger. Novartis will acquire AveXis in a transaction unanimously approved by the Boards of Directors of both companies.

Novartis plans a smooth transition of AveXis operations and the...

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Topics: Research, Front Page News

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