The 2018 Annual SMA Conference, now in its 30th year, is set to kick off on June 14 and continue into a weekend full of programs and events that bring families, researchers and healthcare professionals together. This year’s conference will be the largest in the Midwest to date. We’re expecting 1,600 attendees, including over 400 […]
The 2018 Annual SMA Conference is Here! Read More »
Thank you to the following exhibitors who are generously supporting the 2018 Annual SMA Conference. This incredible and unique event would not be possible without your support! For more information on any of the below companies, please visit our conference exhibitor page. Conference Exhibitors Platinum Exhibitors Gold exhibitors Convaid Mobility Works Quantum Adaptive Imports Neotech
Thank You to Our 2018 Annual SMA Conference Exhibitors! Read More »
As the summer season nears, many families will make plans to travel across the country to exciting destinations or to spend time with those they love. This is no different for those affected by SMA. Although travel can present challenges, regardless of distance or method chosen, below are a variety of resources aimed to guide
Traveling with SMA Read More »
Scholar Rock, a biotechnology company based in Boston, recently announced that it has completed dosing of the first cohort and is continuing enrollment of healthy volunteers in its Phase 1 clinical trial of SRK-015. SRK-015, a selective inhibitor of the activation of myostatin, is the company’s lead antibody drug candidate. Scholar Rock believes it has
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 »
