Barry Byrne, MD, PhD: Landscape of Awareness for Neuromuscular Disease

December 2, 2020
Barry J. Byrne, MD, PhD

The chief medical advisor for the Muscular Dystrophy Association discussed the organization’s recent annual telethon and the efforts to inform the public about these diseases.

“One aspect that’s been unique about the neuromuscular community and their response to the pandemic and the isolation that people might face [is] that, in fact, because of this [virtual] access and the fact that we even now do our medical visits through telemedicine, we have an opportunity to reach even a greater portion of the community.”

This year, as has been the case for the last 7 decades, the Muscular Dystrophy Association (MDA) put on its annual telethon in hopes of increasing awareness for a number of neuromuscular diseases. Hosted by celebrity comedian Kevin Hart, the event showcased a number of high-profile guests in an attempt to bring these conditions to the forefront of the public’s mind, particularly in a year that has proved challenging for these patients.

As such, the telethon for 2020 was obviously faced with a number of challenges due to the ongoing pandemic, though these obstacles also offered new opportunities. The shift to telemedicine, in general, has exposed a number of physicians and patients to new ways of interacting—something that the MDA picked up on in its planning process. Additionally, the diversification of how people consume content since the inception of the telethon has been taken into account.

As Barry J. Byrne, MD, PhD, Byrne, chief medical advisor, MDA, and associate chair of pediatrics and director, University of Florida Powell Center for Rare Disease Research and Therapy, told NeurologyLive, this shift provided the organization the chance to take a new approach to reach a new audience and engage with the public. In this interview, Byrne offered an overview of the telethon and how these new virtual methods of communication changed the group’s approach.