News

April 1, 2019

We're Celebrating Local Support

We're Celebrating Local Support

We’re doing everything we can to improve quality of life for children, adults and families affected by SMA. We give individuals and families the information and resources they need to live active, engaged, and hopeful lives today.

We’re dedicating the month of April to...

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Topics: Support & Care, Events & Fundraising, Front Page News

March 28, 2019

Cure SMA Awards $200,000 Grant to Alberto Kornblihtt, PhD, Universidad de Buenos Aires

Cure SMA Awards $200,000 Grant to Alberto Kornblihtt, PhD, Universidad de Buenos Aires

Cure SMA and FAME (Families of SMA, Argentina) have awarded a $200,000 research grant to Alberto Kornblihtt, PhD, at the Universidad de Buenos Aires, Argentina, for his project, "Epigenetics in SMN2 E7 Alternative Splicing II.”

Epigenetics refers to changes that affect how much...

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Topics: Research, Front Page News

March 27, 2019

Cure SMA Awards $200,000 Grant to Charlotte Sumner, MD, Johns Hopkins University

Cure SMA Awards $200,000 Grant to Charlotte Sumner, MD, Johns Hopkins University

Cure SMA has awarded a $200,000 research grant to Charlotte Sumner, MD, at Johns Hopkins University, for her project, "Neurofilaments as markers of neurodegeneration in SMA.”

Dr. Sumner and her team are looking at the neuronal-specific cytoskeletal protein neurofilaments (NFs)...

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Topics: Our Impact, Research, Front Page News

March 26, 2019

The Winter 2019 issue of Compass in Now Available Online

The Winter 2019 issue of Compass in Now Available Online

The Winter 2019 issue of Compass is now available online. This issue covers Cure SMA’s latest drug discovery grant funding and features an updated SMA drug pipeline.

Drug discovery, also called translational...

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Topics: Clinical Trials, Research, Front Page News

March 22, 2019

Team Cure SMA New York City Half Marathon Runners Raise $15,000 for Cure SMA

Team Cure SMA New York City Half Marathon Runners Raise $15,000 for Cure SMA

Nine Team Cure SMA runners completed the 2019 United Airlines New York City Half Marathon on Sunday, March 17. Together, the runners successfully raised over $15,000 for Cure SMA, the...

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

March 21, 2019

Record Number of Abstracts Submitted for the 2019 SMA Researcher Meeting

Abstract submission is now closed for the 2019 SMA Researcher Meeting. We are excited to announce that we received 166 submissions, a record number. Our submissions come from researchers in 20 countries, 11 companies, and close to 65...

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Topics: Research, Front Page News

March 19, 2019

Cure SMA and Parent Project Muscular Dystrophy Announce Collaboration

Cure SMA and Parent Project Muscular Dystrophy Announce Collaboration

Today, Cure SMA and Parent Project Muscular Dystrophy (PPMD) announced their strategic collaboration to collect real-world data to improve the lives of those affected by...

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

March 14, 2019

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

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

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 our priorities to the FDA...

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Topics: Community & Awareness, Research, Front Page News

March 8, 2019

Cure SMA Advocates for SMA Community at ICER Hearing

On Thursday, March 7, Cure SMA testified on behalf of the SMA community at a meeting of the Institute for Clinical and Economic Review (ICER). ICER is an independent health policy group that evaluates the effectiveness of drug treatments, and the costs associated with those treatments.

The purpose of the meeting was to review both...

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Topics: Research, Advocacy, Front Page News

March 5, 2019

Biogen Provides 2019 Community Update on Spinraza

Biogen Provides 2019 Community Update on Spinraza

Dear members of the SMA community,

As we celebrate Rare Disease Day 2019, we are honored to continue supporting the spinal muscular atrophy (SMA) community. In recent weeks and months, we engaged the community on a number of different initiatives and are excited to share updates on our...

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Topics: Clinical Trials, Research, Front Page News

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