News

November 28, 2016

Help Us Shape the Future Together, and Reach our Goal of $750,000

Help Us Shape the Future Together, and Reach our Goal of $750,000

This has been an historic year for the SMA community. On October 28, our pharmaceutical partners at Biogen and Ionis announced that their New Drug Application for Spinraza (nusinersen) was accepted by the FDA. This means...

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Topics: Our Impact, Events & Fundraising, Advocacy, Front Page News

November 16, 2016

Cure SMA Launches Insurance Coverage and Payment Policy Project

Cure SMA Launches Insurance Coverage and Payment Policy Project

Earlier this year, Cure SMA initiated an insurance coverage and payment policy project, in partnership with District Policy Group. The goal of this project is to help facilitate a favorable public and commercial coverage and payment environment. Launched in anticipation of FDA approval of new...

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Topics: Our Impact, Advocacy, Front Page News

November 10, 2016

Cure SMA Joins SMA Europe and TREAT-NMD for Meeting with EMA Regulators

Cure SMA Joins SMA Europe and TREAT-NMD for Meeting with EMA Regulators

Cure SMA will be participating in a one-day workshop with The European Medicines Agency (EMA—the European equivalent of the FDA), SMA Europe and TREAT-NMD to discuss, support and advance the development of therapies for the treatment of SMA.

The workshop will convene key...

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Topics: Community & Awareness, Advocacy, Front Page News

November 9, 2016

Cure SMA to Host Webinar on the New Drug Application Process

Cure SMA to Host Webinar on the New Drug Application Process

On Tuesday, December 6, Cure SMA will be hosting a one-hour webinar on the New Drug Application (NDA) process. The webinar will be held at 12:00pm CST (10:00am PST/11:00am MST/1:00pm EST).

Jill Jarecki, chief scientific officer, and Kenneth Hobby, president, will be joined by a two...

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

October 28, 2016

Biogen’s NDA for Nusinersen Accepted by FDA

Biogen’s NDA for Nusinersen Accepted by FDA

Biogen today announced that its New Drug Application (NDA) for nusinersen, an investigational treatment for spinal muscular atrophy (SMA), has been accepted by the U.S. Food and Drug Administration (FDA) for Priority Review, and that the company’s Marketing Authorization Application...

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Topics: Clinical Trials, Advocacy, Front Page News

October 27, 2016

6th Annual Congressional Dinner Furthers SMA Advocacy Work

6th Annual Congressional Dinner Furthers SMA Advocacy Work

This year’s 6th Annual “Hope on the Hill” Congressional Dinner will be held on Tuesday, November 29, bringing together families, government, and industry for an important evening of collaboration.

We are excited to have

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Topics: Our Impact, Advocacy, Front Page News

October 19, 2016

SMA Community is Granted a Patient Focused Drug Development Meeting with the FDA

SMA Community is Granted a Patient Focused Drug Development Meeting with the FDA

Cure SMA is excited to announce that the SMA community has been granted a 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 testify directly to the...

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

September 27, 2016

Cure SMA Announces Newborn Screening Initiative in Partnership with MDA

Cure SMA Announces Newborn Screening Initiative in Partnership with MDA

Twice this year, Cure SMA has had the opportunity to testify before the federal Advisory Committee on Heritable Disorders on the need for newborn screening for SMA. This committee, part of the...

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

September 26, 2016

Biogen Completes Rolling Submission of New Drug Application to FDA

 Biogen Completes Rolling Submission of New Drug Application to FDA

Biogen and Ionis today announced that Biogen has completed the rolling submission of a New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA) for

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Topics: Clinical Trials, Advocacy

September 2, 2016

We're Partnering With The Mighty!

We're thrilled to announce a new partnership that will bring Cure SMA's resources in front of The Mighty's wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site,...

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Topics: Community & Awareness, Support & Care, Our Impact, Advocacy

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