June 2015

Seven Individuals and Families Recognized for Their Contributions to the Community

Leave a Comment / Community Awareness, Conference, Front Page News /

Each year, while much of our community is gathered together, we use the Annual SMA Conference to recognize several individuals, families and foundations who have provided special support to the Annual SMA Conference and the SMA community. Here are this year’s awardees. On behalf of the entire community, thank you for all you do! Shaina […]

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Cytokinetics Releases Update on Phase 1 Trial at Annual SMA Conference

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At last week’s Annual SMA Conference, Cytokinetics released additional data from their Phase 1 study of CK-2127107, a skeletal muscle activator. Cytokinetics, in partnership with Astellas, has already announced that a Phase 2 study will begin later this year. Our partnership with Cytokinetics highlights two strengths of Cure SMA’s research model: providing seed funding to

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Isis Announces Additional Trial Results at Annual SMA Conference

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At last week’s Annual SMA Conference, Isis Pharmaceuticals, Inc. provided an update on children with spinal muscular atrophy (SMA) who have completed the open-label, Phase 2 multiple-dose study of ISIS-SMNRx and are continuing to receive treatment in an open-label extension (OLE) study. Consistent with earlier observations, increases in muscle function scores and additional motor function

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Cure SMA Announces Nearly $2 Million in New Planned Research Funding

Leave a Comment / Clinical Trials, Front Page News, Our Impact, Research /

Cure SMA has announced plans to fund $1.995 million in new research grants over the next several months. This includes funding for all four areas of our research model—basic research, drug discovery, clinical trials, and clinical care research—plus funding for the 2016 SMA Researcher Meeting, held each year as part of the Annual SMA Conference.

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Dr. Mary Schroth Joins Cure SMA as Medical Professional Education Consultant

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We are very excited to announce that Dr. Mary Schroth has joined us as our medical professional education consultant. She will be working with us a few days each month, depending on her clinic schedule, as Mary remains deeply committed to working with her patients. Mary will also continue to chair our Medical Advisory Council.

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The 2015 Annual SMA Conference is Here!

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The 26th Annual SMA Conference kicks off tomorrow with our Newly Diagnosed Program, and continues into the weekend with all of our usual programs that bring families, researchers, and healthcare providers together to network, learn and —plus a few new initiatives. This will be one of our largest conferences ever. We’re expecting over 1,300 attendees

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2015 Annual SMA Conference Exhibitors

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Thank you to the following exhibitors who have generously supported our 2015 Annual SMA Conference. This one-of-a-kind event would not be possible without your support! For more information on any of these companies, please visit our conference exhibitor page. Platinum Ki MobilityQuantum Rehab Gold 3E Love Bio-Rad Laboratories, Inc. Convaid Neotech Products Percussionaire Permobil PromptCare

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Cure SMA Releases New Clinical Trial Care Series Booklet

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As more and more SMA drug programs progress through clinical trials, there is an increasing need for accurate and unbiased information on clinical trials from our community. Cure SMA has been working to address this through education efforts targeted to the specific needs our community. The centerpiece of these education efforts is our new care

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Isis Releases Encouraging Results from Phase 2 Study

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Isis Pharmaceuticals provided an update on its ongoing open-label Phase 2 clinical study of ISIS-SMNRx in infants with Type I spinal muscular atrophy (SMA). Previously the company reported data from this study on event-free survival, measures of muscle function and assessments of developmental milestones. The data reported now shows continued increases in median event-free survival

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