News

February 2, 2016

Update on 21st Century Cures/Innovation: the Senate's "Step-by-Step" Approach

Update on 21st Century Cures/Innovation: the Senate's

Cure SMA has been carefully monitoring the consideration of 21st Century Cures on Capitol Hill. As you know, the House passed legislation in July last year, but the Senate has not acted on the bill or introduced

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Topics: Advocacy, Front Page News

January 19, 2016

Cure SMA Testifies Before FDA at PDUFA Meeting

Cure SMA Testifies Before FDA at PDUFA Meeting

The Prescription Drug User Fee Act (PDUFA), the law that allows the FDA to collect fees from drug manufacturers to fund the new drug approval process, is set to expire in September 2017. As part of the process to reauthorize this law, the FDA must hold monthly meetings with a stakeholders,...

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Topics: Our Impact, Advocacy, Front Page News

December 10, 2015

5th Annual Congressional Dinner Brings Together Families, Government and Industry

5th Annual Congressional Dinner Brings Together Families, Government and Industry

On December 1, more than 120 people from the SMA community—including government, and industry partners—gathered for the 5th Annual “Hope on the Hill” Congressional Dinner. Several Members of Congress...

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Topics: Community & Awareness, Advocacy, Events & Fundraising, Front Page News

November 20, 2015

5th Annual Hope on the Hill Congressional Dinner Advances SMA Advocacy

5th Annual Hope on the Hill Congressional Dinner Advances SMA Advocacy

This year’s 5th Annual “Hope on the Hill” Congressional Dinner will be held on Tuesday, December 1, bringing together families, government, and industry for an important evening of collaboration.

As more SMA drugs reach late stage clinical trials, we remain focused on...

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Topics: Community & Awareness, Advocacy, Events & Fundraising, Front Page News

November 18, 2015

Clinical and Regulatory Webinar and Extended Q&A Now Available

Clinical and Regulatory Webinar and Extended Q&A Now Available

A recording of last week’s Cure SMA Clinical and Regulatory Webinar is now available online.

WATCH

Our thanks again to our three panelists—Dr. Tim Franson, Dr. Tim...

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Topics: Clinical Trials, Advocacy, Front Page News

November 4, 2015

Tell Your Senator to Support Innovations for Healthier Americans

Tell Your Senator to Support Innovations for Healthier Americans

We need your help in contacting your Senators to tell them that legislation promoting innovation and research is extremely important to you and that the discovery of the next generation of cures and treatments for disease needs to start now!

We are concerned about Congress' lack of...

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Topics: Advocacy, Front Page News

October 27, 2015

Cure SMA Publishes Journal Article on the Patient Voice

Cure SMA, along with collaborators from Biogen and the SMA Foundation, have published a paper in the journal BMC Neurology.

Over the past year, we’ve completed 16 focus group sessions and 37 interviews in the US with 96 participants including: 21 with...

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Topics: Advocacy, Research, Front Page News

September 30, 2015

House of Representatives Passes Ensuring Access to Clinical Trials Act

The House of Representatives has passed the Ensuring Access to Clinical Trials Act of 2015 (EACT). This bill already passed the Senate in July, and will now go to President Obama to be signed into law.

This bill allows individuals to receive up to $2,000 as compensation for participating in a clinical trial, without those funds counting...

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Topics: Advocacy, Front Page News

September 23, 2015

FDA Engagement Update: The Voices of SMA

FDA Engagement Update: The Voices of SMA

Thanks to our vibrant community, August was one of our largest and best awareness months ever, with unprecedented levels of public awareness and outreach for SMA.

Toward the end of August, we challenged our community to seize this momentum, and convert awareness into action and...

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Topics: Community & Awareness, Advocacy, Front Page News

July 10, 2015

House of Representatives Passes 21st Century Cures

The House of Representatives has passed 21st Century Cures. Cure SMA is proud to support this legislation. Thank you for your calls and tweets to voice your support to your Representatives. They really made a difference!

So what happens next? The Senate is busy drafting their version of the bill, called "Innovation," and we expect...

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Topics: Advocacy, Front Page News

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