News
April 18, 2018
Spring 2018 Issue of Compass Now Available Online
The Spring 2018 issue of Compass is now available online. The issue covers Cure SMA’s newborn screening efforts, including how NBS can help children diagnosed with SMA, the addition of SMA to the federal Recommended...
Topics: Research, Advocacy, Front Page News
April 17, 2018
Registration for the 2018 Annual SMA Conference Closes in Two Weeks
The deadline to register for the 2018 Annual SMA Conference is just two weeks away! Registration will close on Friday, May 4th. Over 1,100 people have already registered – don’t miss your chance to engage with families, researchers and medical providers at largest...
Topics: Support & Care, Conference, Front Page News
April 16, 2018
Genentech to Present New RG7916 Data at the American Academy of Neurology (AAN) Annual Meeting
Genentech/Roche announced today that new data on its approved and investigational medicines for neurological conditions will be presented during the 70th American Academy of Neurology (AAN) Annual Meeting from April 21-27 in Los Angeles, California. The data will include investigational...
Topics: Clinical Trials, Research, Front Page News
April 13, 2018
Cure SMA Awards $150,000 Grant to Bakri Elsheikh, MD, Ohio State University Wexner Medical Center
Cure SMA has awarded a $150,000 research grant to Bakri Elsheikh, MD, at the Ohio State University Wexner Medical Center, for his project, "Determine the motor unit response following SMN restoration in late-onset spinal muscular atrophy”.
Dr. Elsheikh and his team will study...
Topics: Our Impact, Research, Front Page News
April 9, 2018
Cure SMA Database Findings Published in the Journal of Neuromuscular Diseases
An important goal at Cure SMA is to collect data to better understand the SMA patient population, and then to report this data back to our industry partners, regulators, and payers. In collecting this data, we also hope to identify areas where additional care, advocacy, support, and research...
Topics: Our Impact, Research, Front Page News
April 9, 2018
Novartis Agrees to Acquire AveXis
AveXis, Inc. and Novartis announced today that they have entered into an agreement and plan of merger. Novartis will acquire AveXis in a transaction unanimously approved by the Boards of Directors of both companies.
Novartis plans a smooth transition of AveXis operations and the...
Topics: Research, Front Page News
April 6, 2018
The Genetics of SMA – What is the SMN1 Gene?
Spinal muscular atrophy is caused when an individual has two missing or faulty SMN1 genes. But what is the SMN1 gene, and what does it do?
About the SMN1 Gene
SMN1 stands for survival motor gene 1. This gene is responsible for...
Topics: About SMA, Research, Front Page News
April 6, 2018
SMA Newborn Screening Guidelines Published in Journal of Neuromuscular Diseases
The recent decision of the federal Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) to recommend SMA for addition to the RUSP, as well as the implementation of SMA newborn screening (NBS) by several states, has ushered in the ability to identify infants with...
Topics: Community & Awareness, Our Impact, Front Page News
April 4, 2018
Nathan Yates, Inspiring Others
Growing up in Virginia, Nathan Yates always had a vision for his future. From an early age, he became interested in finance, and as a teenager managed his own small portfolio of stocks. Diagnosed in 1989, he also lives with spinal muscular atrophy type 2. To date, Nathan’s diagnosis has...
Topics: Community & Awareness, Front Page News
April 2, 2018
Cure SMA Welcomes Back AveXis as a 2018 National Premier Partner
Cure SMA is excited to announce that AveXis is returning as a National Premier Partner for 2018.
As part of their partnership, AveXis is generously supporting our Chapter Leader Summit, a full day of training and information-sharing for 70 chapter...
Topics: Our Impact, Events & Fundraising, Front Page News
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