News

February 16, 2017

Cure SMA to Host Webinar with the FDA and Patient Advocates

Cure SMA to Host Webinar with the FDA and Patient Advocates

Cure SMA is pleased to announce a new webinar on interactions between the FDA and the SMA community. The webinar will be held on March 8, 2017, at 1:00pm EST (10:00am PST/ 11:00am MST/ 12:00pm CST). 

The goal is to provide both a broad overview of how our...

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Topics: Community & Awareness, Advocacy, Front Page News

February 9, 2017

Cure SMA Launches Newborn Screening Coalition

Cure SMA Launches Newborn Screening Coalition

As SMA drug development continues to move forward, Cure SMA is focused on ensuring that approved therapies are accessible to our entire community. This includes making therapies widely available at clinical sites across the US, and facilitating insurance coverage. In addition, newborn...

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Topics: Our Impact, Advocacy, Front Page News

February 2, 2017

Registration Opens for the SMA Patient-Focused Drug Development Meeting with the FDA

Registration Opens for the SMA Patient-Focused Drug Development Meeting with the FDA

Registration is now open for the SMA Patient-Focused Drug Development (PFDD) meeting with the FDA. The PFDD meeting will be held at the College Park Marriott, near Washinton DC, on Tuesday, April 18. 

There are two primary ways to participate in this...

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Topics: Our Impact, Advocacy, Front Page News

January 12, 2017

Updated SMA Drug Pipeline Released as First Commercial Patient Receives Spinraza

Updated SMA Drug Pipeline Released as First Commercial Patient Receives Spinraza

With the news today that the first-ever patient has received the first commercial Spinraza dose, we are releasing an updated version of our SMA drug pipeline. This new version reflects the approval of Spinraza, as well as the true start of a key stage to ensure that more and more patients are...

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Topics: Community & Awareness, Advocacy, Front Page News

January 9, 2017

SMA Patient-Focused Drug Development Meeting with FDA Set for April 18, 2017

SMA Patient-Focused Drug Development Meeting with FDA Set for April 18, 2017

Tuesday, April 18, 2017, has been announced as the date for the SMA Patient-Focused Drug Development Meeting with the FDA.

At the Patient Focused Drug Development (PFDD) Meeting, individuals and families from throughout our community will have the opportunity to share their stories...

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Topics: Community & Awareness, Advocacy, Front Page News

December 29, 2016

Join Us for an Upcoming Webcast about SPINRAZA TM (nusinersen)

Please join Cure SMA, MDA and representatives from Biogen to learn more about SPINRAZA™ (nusinersen). As you know, SPINRAZA recently received FDA approval in the U.S. for the treatment of Spinal Muscular Atrophy (SMA) in pediatric and adult patients. In order to receive an update on SPINRAZA, please join this webcast, which is intended...

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Topics: Community & Awareness, Clinical Trials, Advocacy, Front Page News

December 23, 2016

FDA Approves Spinraza for SMA

FDA Approves Spinraza for SMA

On December 23, the FDA announced that it has approved SpinrazaTM (nusinersen) to treat spinal muscular atrophy, making it the first-ever FDA-approved therapy for SMA.

We...

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Topics: Our Impact, Clinical Trials, Advocacy, Front Page News

December 19, 2016

Cure SMA Participates in a Special FDA Listening Session

Cure SMA Participates in a Special FDA Listening Session

Last week, Cure SMA participated in a listening session with FDA Commissioner Robert M. Califf, MD, MACC. The FDA organized the listening session in order to gain a better understanding of the current goals, priorities, and challenges of our community.

Representatives from Cure SMA...

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Topics: Community & Awareness, Our Impact, Advocacy, Front Page News

December 12, 2016

SMA Community Conducts Outreach Visits with Members of Congress

SMA Community Conducts Outreach Visits with Members of Congress

On November 30, members of the SMA community met with 17 different legislative offices— eight from the Senate and nine from the House of Representatives. 

These Senators and Representatives serve on committees important to our community's goals, including the House Energy...

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Topics: Advocacy, Front Page News

December 1, 2016

Annual Congressional Dinner Brings SMA Community Together on the Eve of 21st Century Cure Bill Passage

Annual Congressional Dinner Brings SMA Community Together on the Eve of 21st Century Cure Bill Passage

On Tuesday, November 29, more than 160 people from the SMA community - including government and industry partners - gathered for the 6th Annual "Hope on the Hill" Congressional Dinner.

Several Members of Congress attended the dinner, including Reps. Sean Duffy, Bill Foster, Jeb...

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Topics: Community & Awareness, Advocacy, Front Page News

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