Cure SMA has been closely monitoring news and reports of the Coronavirus (COVID-19) outbreak, allowing us to make decisions about local events and offer new resources that support the SMA community. The current status of the pandemic and associated governmental regulations, restrictions, and advisories, as well as the need to protect those with SMA who […]
Dear SMA Community, Like many organizations across the United States and around the world, AveXis is closely monitoring the coronavirus disease (COVID-19) and its impact on patients, the SMA community, healthcare providers, and our employees and partners. We know that life with a rare genetic disease can bring significant challenges,
We want you to know that Cure SMA continues to be here for the entire SMA community. We remain vigilant in monitoring and responding to your needs, as your health, safety, and well-being are always our top priority. The following FAQs are designed to help address continued concerns expressed by members of the SMA community
Answering Your Coronavirus (COVID-19) Medical Questions Read More »
As news about the Coronavirus (COVID-19) continues to evolve, Cure SMA has now decided to cancel all events (i.e., galas, dinners, Walk-n-Rolls, Summits of Strength) through the end of May. This decision took into account the most recent recommendation from the Centers for Disease Control and Prevention (CDC) to limit or cancel all gatherings of
Dear SMA Community, We want to provide an update on Biogen’s efforts to help ensure the health and safety of the SMA community amid the novel Coronavirus (COVID-19). As you may have heard, on February 26-27, Biogen held a strategic management meeting in Boston with primarily office-based employees. Following the meeting, several attendees developed flu-like
Biogen Issues Community Letter with Perspective on Coronavirus (COVID-19) Read More »
As coronavirus, also known as COVID-19, continues to spread in communities, Cure SMA has also been closely tracking the situation. The health, safety, and well-being of the entire SMA community is important to us. While community engagement is a longtime Cure SMA priority and several opportunities for involvement are fast approaching, we are cognizant of
This article is part of a series of Cure SMA grant announcements being shared throughout the winter/spring. Cure SMA has awarded a $150,000 grant to Timra Gilson, Ph.D., of Indiana University, for her project titled, “αCOP complex dependent axonal transport of RNA.” Dr. Gilson is a post-doctoral researcher working in the laboratory of Dr. Elliot
This article is part of a series of Cure SMA grant announcements that will be shared throughout the next couple of months. Cure SMA has awarded a $150,000 grant to Dmytro Morderer, Ph.D., of the Mayo Clinic in Jacksonville, Fla., for his project titled, “Effect of SMN deficiency on ribonucleoprotein assembly.” Dr. Morderer is a
This article is part of a series of Cure SMA grant announcements that will be shared throughout the next couple of months. Cure SMA has awarded a $170,000 research grant to Lyndsay Murray, Ph.D., at the University of Edinburgh, for her project titled, “Developing strategies to support enlarged motor units following SMN restoration in mouse
To help clinicians and the families they serve in the decision of when to administer therapy to infants identified with SMA via newborn screening, Cure SMA convened a working group comprised of 15 SMA experts to develop treatment guidelines. These guidelines, “Treatment Algorithm for Infants Diagnosed with Spinal Muscular Atrophy through Newborn Screening,” were originally
