News

December 13, 2018

Biogen Issues Q4 Community Statement on Spinraza

Biogen Issues Q4 Community Statement on Spinraza

Bigoen has provided the below community statement on Spinraza. 

Dear Members of the SMA community,

As we approach the two-year anniversary of the U.S. Food and Drug Administration’s (FDA) approval of SPINRAZA® (nusinersen), we want to thank you for your ongoing...

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Topics: Clinical Trials, Research, Front Page News

December 12, 2018

AveXis Issues Community Statement on BLA Acceptance

AveXis Issues Community Statement on BLA Acceptance

AveXis has provided the following community statement on the BLA submission and acceptance for their investigational therapy, AVXS-101 - now known as ZOLGENSMA®.

Dear SMA Community,

We are providing this update to the SMA community in the U.S. at the request of Cure SMA....

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Topics: Clinical Trials, Research, Front Page News

December 10, 2018

Closing out 2018 with Good News: Virginia Adopts SMA to their Newborn Screening Panel, Arizona Moves Closer to Adopting SMA Newborn Screening and Illinois Medicaid Covers Spinraza Treatment

Closing out 2018 with Good News: Virginia Adopts SMA to their Newborn Screening Panel, Arizona Moves Closer to Adopting SMA Newborn Screening and Illinois Medicaid Covers Spinraza Treatment

The SMA community has multiple victories to celebrate as the year comes to an end. Thank you to all our amazing families and advocates who have and continue to make this progress possible.

Virginia Adopts SMA Newborn Screening

Last month, Virginia’s Newborn Screening...

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Topics: Community & Awareness, Advocacy, Front Page News

December 4, 2018

Fall 2018 Issue of Compass Now Available

Fall 2018 Issue of Compass Now Available

The fall 2018 issue of Compass is now available online.

This issue of Compass covers the SMA Care Center Network and its goal of developing an evidence-based standard of care to improve the lives of people with...

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Topics: Support & Care, Our Impact, Front Page News

December 3, 2018

Novartis Announces FDA Filing Acceptance and Priority Review for AVXS-101

Novartis Announces FDA Filing Acceptance and Priority Review for AVXS-101

Novartis today announced that the U.S. Food and Drug Administration (FDA) has accepted the company’s Biologics License Application (BLA) for AVXS-101, now known as ZOLGENSMA®...

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Topics: Clinical Trials, Research, Front Page News

November 29, 2018

Register for Cure SMA's Webinar on SMA Treatments and Clinical Trials

Register for Cure SMA's Webinar on SMA Treatments and Clinical Trials

On Wednesday, December 12th, at 12:00pm CST (10:00am PST/11:00am MST/1:00pm EST) Cure SMA will hold a webinar updating the community on the latest information on SMA treatments and trials. Topics covered will include:

  • AveXis's BLA filing with the FDA
  • Status of access...

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Topics: Support & Care, Clinical Trials, Front Page News

November 29, 2018

Scholar Rock Announces Publication of Preclinical Data on the Therapeutic Benefit of Inhibiting Myostatin Activation in Models of SMA

Scholar Rock Announces Publication of Preclinical Data on the Therapeutic Benefit of Inhibiting Myostatin Activation in Models of SMA

Scholar Rock, a clinical-stage biopharmaceutical company focused on the treatment of serious diseases in which protein growth factors play a fundamental role, today announced the publication, “Specific...

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Topics: Clinical Trials, Research, Front Page News

November 14, 2018

Cure SMA Launches "SMArt Moves" for Early Diagnosis and Treatment

Cure SMA Launches

Cure SMA today launches SMArt Moves, a new disease awareness and educational campaign to empower parents, pediatricians and other healthcare professionals to swiftly recognize and diagnose the early signs of motor delays. This allows infants and...

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

November 13, 2018

8th Annual "Hope on the Hill" Congressional Dinner Will Be Held Later This Month in Washington D.C.

8th Annual

The 8th Annual “Hope on the Hill” Congressional Dinner will be held on Tuesday, November 27, bringing together SMA families, government officials, and industry leaders to look forward to the...

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Topics: Advocacy, Events & Fundraising, Front Page News

November 6, 2018

Cure SMA is Thrilled to Launch a New Support Program for Teens and Adults with SMA

Cure SMA is Thrilled to Launch a New Support Program for Teens and Adults with SMA

Along with funding SMA research and care, Cure SMA provides thousands of individuals and families with vital family support and resources that help people navigate life with SMA. In addition to our current support programs, Cure SMA is thrilled to launch a brand-new program specifically for...

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Topics: Community & Awareness, Support & Care, Front Page News

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