News
May 29, 2018
Full Schedule of Workshops, Panels and Speakers for the 2018 Annual SMA Conference Announced
Cure SMA has released the full schedule of workshops, panels and speakers for the 2018 Annual SMA Conference, to be held at the Hilton Anatole Hotel in Dallas, TX from June 14-17.
A detailed timeline with locations are included in the updated schedule, as well as several new workshops...
Topics: Conference, Front Page News
May 24, 2018
Cure SMA Awards $150,000 Grant to Kathryn Swoboda, MD, Massachusetts General Hospital
Cure SMA has awarded a $150,000 research grant to Kathryn Swoboda, MD, at the Massachusetts General Hospital, for her project, "Clinical and pathologic correlations in patients with early infantile-onset SMA.”
SMA is caused by mutations in the SMN1 gene resulting in low levels of...
Topics: Our Impact, Research, Front Page News
May 24, 2018
2018 Annual SMA Conference Booklet Released
The 2018 Annual SMA Conference Booklet is now posted.
The 112-page booklet includes information on workshops, special events and details of the 30th Anniversary SMA Conference, including:
1. A...
Topics: Conference, Front Page News
May 22, 2018
Biogen Releases Community Statement on Spinraza Access and New Data
Biogen has released the following community statement on Spinraza access and new research data.
Dear Members of the SMA community,
Thank you for your continued support, efforts to raise awareness about SMA, and participation in clinical trials and studies as we seek to expand...
Topics: Clinical Trials, Research, Front Page News
May 21, 2018
2018 Family Friendly Poster Session Presenters Announced
The Family Friendly Research Poster Session allows for one-on-one interactions between families and researchers. Cure SMA has invited researchers, who are attending SMA Researcher Meeting, to present family friendly research posters. During the event, families are encouraged to rotate to the...
Topics: Conference, Front Page News
May 17, 2018
Spring 2018 Issue of Directions Now Available
The Spring 2018 issue of Directions is now available online. Check out our Support & Care publications page to download past issues of Directions and Cure SMA's Care...
Topics: Support & Care, Our Impact, Front Page News
May 17, 2018
Cure SMA and Cytokinetics Announce National Platinum Partnership for 2018
Cure SMA and Cytokinetics are very pleased to announce that Cytokinetics has committed to a National Platinum Partnership for 2018....
Topics: Support & Care, Events & Fundraising, Front Page News
May 15, 2018
Novartis Successfully Completes Acquisition of AveXis, Inc.
Dear SMA Community,
Following the announcement last month, we wanted to let you know that AveXis (the gene therapy company developing a new approach to treat SMA known as AVXS‐101) is
Topics: Research, Front Page News
May 14, 2018
Indiana Becomes Fourth State to Adopt Newborn Screening for Spinal Muscular Atrophy
On Friday, Governor Eric Holcomb held a signing ceremony for Indiana House Bill 1017, adopting newborn screening for spinal muscular atrophy (SMA) and severe combined immunodeficiency (SCID).
Dubbed “Graham’s Bill” in honor of Graham Vollmer, the bill was largely...
Topics: Our Impact, Advocacy, Front Page News
May 9, 2018
SMA Advocates Meet With House and Senate Offices
On Thursday, April 26, Cure SMA traveled with more than 70 spinal muscular atrophy advocates to Washington DC to meet with congressional offices. The advocates represented 24 states and DC. The purpose of the advocacy day was to advance life-changing opportunities for our community through SMA...
Topics: Our Impact, Advocacy, Front Page News
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