News

June 2, 2015

Cure SMA Announces Partnership with The District Policy Group

Cure SMA has announced a new partnership with the District Policy Group, a boutique lobbying, public policy, and advocacy practice, to advocate for several key policy areas on behalf of the SMA community.

With seven drug programs now in clinical trials, the Patient-Focused Drug Development...

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Topics: Advocacy, Front Page News

May 27, 2015

Cure SMA Receives NIH Grant

For the seventh consecutive year, Cure SMA has received a grant from the National Institutes of Health (NIH) for the SMA Researcher Meeting.

This year’s grant will go toward conference expenses for fellows, who are younger researchers in training. With the help of this...

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Topics: Conference, Advocacy, Research, Front Page News

May 22, 2015

21st Century Cures Unanimously Passes Committee

Yesterday, the 21st Century Cures bill was unanimously passed by the House Energy and Commerce Committee. 21st Century Cures would overhaul how the Food and Drug Administration evaluates new medical products and provide $10 billion in mandatory funding for the National Institutes of...

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Topics: Advocacy, Front Page News

May 13, 2015

Cure SMA Joins The Research Acceleration and Innovation Network

Cure SMA Joins The Research Acceleration and Innovation Network

Cure SMA has become a participating organization of The Research Acceleration and Innovation Network (TRAIN), a program of FasterCures, bringing the total number of venture philanthropies in TRAIN to 80.

FasterCures established TRAIN in 2005 to connect disruptive...

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Topics: Community & Awareness, Advocacy, Front Page News

May 11, 2015

Update on SMA-FDA Interactions

Update on SMA-FDA Interactions

The SMA drug pipeline has grown dramatically in just over a decade. Of the 17 programs in the pipeline, seven of these are in clinical trials, and two of those are in Phase 3 clinical trials.

Reaching and achieving FDA approval is a major hurdle in our path to a treatment and cure....

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

May 5, 2015

New 21st Century Cures Discussion Draft Released

The US House of Representatives Energy and Commerce Committee has released a new 21st Century Cures discussion draft. This is a revised and expanded version of the first draft that was released in January.

The 21st Century Cures initiative was created to investigate how the...

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Topics: Community & Awareness, Advocacy, Front Page News

January 28, 2015

21st Century Cures Discussion Document Released

The US House of Representatives Energy and Commerce Committee has released the 21st Century Cures discussion document. The 21st Century Cures initiative was created to investigate how the government can help "accelerate the discovery, development, and delivery of promising new treatments and cures for patients."

This initiative is led...

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Topics: Community & Awareness, Advocacy, Front Page News

December 8, 2014

Hope on the Hill Advances Key SMA Legislative Priorities

Hope on the Hill Advances Key SMA Legislative Priorities

This year's 4th Annual Hope on the Hill Congressional Dinner in Washington D.C. was a great success. Building on of this year’s Annual SMA Conference—also held in Washington D.C.—the Hope on the Hill Dinner brought together families, government, and industry leaders to work...

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

November 13, 2014

Families, Government, and Industry Leaders Unite to Help Cure SMA

This year's 4th Annual Hope on the Hill Congressional Dinner in Washington D.C. is less than three weeks away.

At Cure SMA, we know that no single group can develop a treatment for SMA alone—it requires collaboration between academics, industry, government, and families. That is why we're committed to tangible, meaningful efforts to...

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

September 18, 2014

Urge Your Senators to Support Passage of the Newborn Screening Saves Lives Reauthorization Act

 

Topics: Advocacy

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