News

February 28, 2018

#ShowYourRare and Raise SMA Awareness on World Rare Disease Day

#ShowYourRare and Raise SMA Awareness on World Rare Disease Day

Rare Disease Day is today, February 28! And we’re calling on our entire spinal muscular atrophy community to get involved.

Rare Disease Day is important to us because it is a time for individuals impacted by a rare disease—or those whose loved ones are impacted—to...

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Topics: Community & Awareness, Advocacy, Front Page News

February 23, 2018

Last Week's Webinar on Treatment Access and Clinical Trials Now Available

A recording of last week’s webinar updating the community on treatment access and clinical trials is now available online. A PDF of the webinar presentation is also available for download.

An update on...

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

February 22, 2018

Cure SMA Receives Generous Gift from the Weisman Family Foundations

Cure SMA Receives Generous Gift from the Weisman Family Foundations

The Weisman Family Foundations recently awarded $65,800 to Cure SMA, in order to further new scientific research, and to help provide access to treatments, clinical trials and care.

Each year, a generous donation is made by the Weisman Family Foundations. Through contributions from...

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Topics: Community & Awareness, Front Page News

February 21, 2018

Phase 2 Clinical Trial Results for CK-2127107 Expected in Second Quarter of 2018

Phase 2 Clinical Trial Results for CK-2127107 Expected in Second Quarter of 2018

Cytokinetics is currently conducting a Phase 2 clinical trial of CK-2127107 – now referred to by the generic name, reldesemtiv – which is designed to assess the investigational agent’s effect on multiple measures of muscle function in both ambulatory and non-ambulatory...

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Topics: Clinical Trials, Research, Front Page News

February 16, 2018

Cure SMA Receives Generous Gift

Cure SMA is extremely pleased to announce a generous $620,000 gift has been made to the organization. The donation was made anonymously in honor of William N. Kanehann. Billy had SMA and died in 2013 at the age of 23. We are grateful for this amazing donation in memory of his life.

This gift will be dedicated to supporting new...

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

February 14, 2018

Biogen Releases Statement on CHERISH Data and Plans for New Clinical Research

Biogen Releases Statement on CHERISH Data and Plans for New Clinical Research

Biogen has provided the following community statement on the final results from CHERISH, a Phase 3 study of SPINRAZA. 

Dear Members of the SMA community,

This past December marked one year since the FDA approval of SPINRAZA® (nusinersen), the first and only treatment...

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Topics: Clinical Trials, Research, Front Page News

February 14, 2018

Additional Funding for SMA Care Centers Announced

Cure SMA is pleased to announce the second round of grants from $450,000 in funding, awarded to a total of 9 sites to help increase capacity at SMA treatment centers across the US.

In January 2018, Cure SMA selected five additional treatment centers, totaling $200,000, to...

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

February 12, 2018

Cure SMA Announces Local Educational Symposiums in 16 US Locations

Cure SMA is pleased to announce a slate of one-day local symposiums, beginning late spring and continuing into fall 2018. The symposiums will be held in 16 locations across 15 states across the US. Through these local symposiums, the SMA community will continue to share experiences, advocate for one another, and learn about the latest...

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

February 9, 2018

Winter 2018 Compass Now Available Online

Winter 2018 Compass Now Available Online

The winter 2018 issue of Compass is now available online.

This issue covers Cure SMA’s community survey, and reviews how data is used to improve research, care and coverage in the SMA...

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Topics: Support & Care, Research, Front Page News

February 8, 2018

Advisory Committee on Heritable Disorders in Newborns and Children Recommends Nationwide Newborn Screening for Spinal Muscular Atrophy

Advisory Committee on Heritable Disorders in Newborns and Children Recommends Nationwide Newborn Screening for Spinal Muscular Atrophy

The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) today recommended that newborn screening for spinal muscular atrophy be implemented nationwide.

This decision is an important step toward our goal of having every baby born in the United States screened for...

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Topics: Our Impact, Advocacy, Front Page News

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