News

March 14, 2018

Cure SMA Awards $75,000 Grant to Robert Kalb, MD, Northwestern University

Cure SMA Awards $75,000 Grant to Robert Kalb, MD, Northwestern University

Cure SMA has awarded a $75,000 research grant to Robert Kalb, MD, at Northwestern University Feinberg School of Medicine, for his project, "Effects of diminished SMN on segmental spinal cord innervation of motor neurons.”

Dr. Kalb and his team have conducted studies that indicate...

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Topics: Our Impact, Research, Front Page News

March 13, 2018

Cure SMA to Host Inaugural Clinical Care Meeting

Cure SMA to Host Inaugural Clinical Care Meeting

Clinicians across the country are invited to share experiences, successes and ideas at the inaugural SMA Clinical Care Meeting to be held on Saturday, June 16, 2018 at the 2018 Annual SMA Conference in Dallas, Texas.

As Spinraza and future...

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Topics: Support & Care, Conference, Front Page News

March 13, 2018

Cure SMA Awards $150,000 Grant to Umrao Monani, PhD, Columbia University

Cure SMA Awards $150,000 Grant to Umrao Monani, PhD, Columbia University

Cure SMA has awarded a $150,000 research grant to Umrao Monani, PhD, at Columbia University, for his project, "SMA modulators as a means to revealing disease mechanisms.”

Dr. Monani and his team have generated SMA model mice and shown that their genetic background can alter...

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Topics: Our Impact, Research, Front Page News

March 12, 2018

Biogen Announces New Interim Phase 2 Results From NURTURE

Biogen Announces New Interim Phase 2 Results From NURTURE

Biogen recently announced new interim Phase 2 results from NURTURE, the ongoing open-label, single-arm study evaluating the efficacy and safety of SPINRAZA or nusinersen among pre-symptomatic infants with spinal muscular atrophy. Additionally, data from a case series conducted on...

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Topics: Clinical Trials, Research, Front Page News

March 12, 2018

Cure SMA Launches Second Annual Community Survey to Address Important Issues in SMA Treatment

Cure SMA Launches Second Annual Community Survey to Address Important Issues in SMA Treatment

Dear Members of the SMA Community,

For the past several years, we’ve been working to collect data and information on our community’s experiences, goals, hopes, and challenges. We know that the voice of our community is powerful. By sharing our stories, we can communicate...

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Topics: Community & Awareness, Research, Front Page News

March 9, 2018

Indiana is the Fourth State to Adopt Permanent SMA Screening

Indiana is the Fourth State to Adopt Permanent SMA Screening

Last night, Governor Eric Holcomb of Indiana signed HB 1017, adding spinal muscular atrophy (SMA) and severe combined immunodeficiency (SCID) to the state’s newborn screening panel.

The bill makes Indiana the fourth state in the country to adopt permanent SMA screening, following...

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Topics: Community & Awareness, Advocacy, Front Page News

March 7, 2018

Cure SMA Awards $150,000 Grant to Allison Ebert, PhD, Medical College of Wisconsin

Cure SMA Awards $150,000 Grant to Allison Ebert, PhD, Medical College of Wisconsin

Cure SMA has awarded a $150,000 research grant to Allison Ebert, PhD, at the Medical College of Wisconsin, for her project, "Role of astrocyte-produced miR-146a in SMA pathology.”

SMA is caused by mutations in the SMN1 gene resulting in low levels of SMN protein, which is...

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Topics: Our Impact, Research, Front Page News

March 6, 2018

Awareness is Best Raised When We Work Together

Awareness is Best Raised When We Work Together

When a loved one is affected by spinal muscular atrophy, whether recently diagnosed or living with SMA for a while, you want to make a difference in their life and in the lives of all those affected by SMA.

At Cure SMA, we believe in the power of the SMA community working together....

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

March 1, 2018

Cure SMA Welcomes New Medical Advisory Council Committee Members

We are excited to welcome 20 new members to our Medical Advisory Council (MAC). These clinicians represent eleven specialties, including specialties that were not previously represented on the MAC.

Our new members are:

  • Alison Ballard, RN, MSN, Pediatric Nurse Practitioner and Neuromuscular Care...

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Topics: Support & Care, About Us, Front Page News

February 28, 2018

SMA Newborn Screening Moves Forward in Indiana, Ohio and Georgia

SMA Newborn Screening Moves Forward in Indiana, Ohio and Georgia

The spinal muscular atrophy community is celebrating significant progress toward adding SMA to newborn screening panels in several states.

Indiana Poised to Become the Fourth State to Adopt SMA Screening

In Indiana, HB 1017 has been passed by both the House and Senate, and is...

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Topics: Community & Awareness, Advocacy, Front Page News

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