The Ohio Newborn Screening Advisory Committee recommended that SMA be added to their state’s newborn screening panel. The recommendation now goes to the Ohio Department of Health for a rulemaking process. Once these rules are developed and approved, SMA will be officially added to the state panel. During this rulemaking process, SMA advocates will be […]
Ohio Moves One Step Closer to SMA Newborn Screening Read More »
Roche today provided the following community statement on olesoxime. Dear members of the SMA Community, We would like to provide you with an update about olesoxime, an investigational molecule in SMA. Since we bought olesoxime from Trophos in 2015, we have had many difficulties in developing this molecule for people with SMA. These difficulties have
Roche Releases Community Statement on Olesoxime Program Read More »
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 like Oral-Motor Exercises for Speech Clarity
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 SMN protein, which is expressed in every cell in the body.
Cure SMA Awards $150,000 Grant to Kathryn Swoboda, MD, Massachusetts General Hospital Read More »
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 complete schedule, full agenda, and descriptions and speaker bios for the 56 workshops. 2. Details about many of the special events planned during the Annual SMA
2018 Annual SMA Conference Booklet Released Read More »
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 access to SPINRAZA® (nusinersen) for individuals with SMA around the world.
Biogen Releases Community Statement on Spinraza Access and New Data Read More »
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 different posters to ask questions and learn directly from the researchers involved in each
2018 Family Friendly Poster Session Presenters Announced Read More »
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 Series booklets. Our biannual newsletter builds our community by sharing updates, stories and experiences. Families from all over the world connect with each other through Cure SMA
Spring 2018 Issue of Directions Now Available Read More »
Cure SMA and Cytokinetics are very pleased to announce that Cytokinetics has committed to a National Platinum Partnership for 2018. Cytokinetics will be supporting several of Cure SMA’s awareness, education, and fundraising initiatives for spinal muscular atrophy (SMA), at both the local and national level. As part of their partnership, Cytokinetics is sponsoring the 2018 Annual
Cure SMA and Cytokinetics Announce National Platinum Partnership for 2018 Read More »
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 advanced by the efforts of Adrienne Vollmer, Graham’s mother, and State Representative Doug Gutwein, the bill’s
Indiana Becomes Fourth State to Adopt Newborn Screening for Spinal Muscular Atrophy Read More »
