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The chief medical advisor for the Muscular Dystrophy Association spoke about the process of keeping patients updated on new information and how the MDA has taken steps to ensure the neuromuscular community gets the correct information.
“It’s not only ill contacts that we advised against people interacting with, but it’s possible—particularly in the younger population—to be an asymptomatic carrier for up to 2 days. Really, the same precautions that are recommended for everyone are especially important for the neuromuscular community.”
As the ongoing battle against the spread of COVID-19 and the SARS-CoV-2 virus continues, the medical community has continued to learn more about the disease and the at-risk populations. The Centers for Disease Control and Prevention’s (CDC) guidelines have focused on the specific populations related to risk to travelers, the elderly and those with conditions that affect respiratory health, and there are a number of patients in the neuromuscular community who fall into those categories.
To find out more about what those who are treating patients with conditions like spinal muscular atrophy (SMA), Duchenne muscular dystrophy (DMD), and amyotrophic lateral sclerosis (ALS), among others, are doing in response, NeurologyLive connected virtually with Barry J. Byrne, MD, PhD. Byrne, the chief medical advisor to the Muscular Dystrophy Association (MDA), and associate chair of pediatrics and director at the University of Florida Powell Center for Rare Disease Research and Therapy, discussed what they have been advising their patients and care centers.
As well, Byrne mentioned the MDA’s resource center, which expands on the CDC’s guidelines for COVID-19 to offer the neuromuscular community-specific information relevant to COVID-19. That resource can be accessed at the MDA COVID-19 webpage. He clarified that it is not only those who are in the later stages of disease with respiratory challenges who are at risk and discussed how the MDA page is updated frequently to address new information for patients and providers.