MDA Hosts Facebook Live Event on ALS and COVID-19 on May 1

The Muscular Dystrophy Association (MDA) is hosting a Facebook Live event on May 1 concerning precautions and best practices needed to protect the amyotrophic lateral sclerosis (ALS) community during the COVID-19 outbreak.

The half-hour event, which kicks off ALS Awareness Month, is to begin at 3 p.m. EST, and will give patients and caregivers globally an opportunity to question a pair of neuromuscular disease experts. It will cover topics related to preparedness, community impact, telemedicine, and MDA care and resources.

Leading up to the event, the MDA welcomes questions from the ALS community on its Facebook page.

“The conversation aims to provide the answers to care questions families urgently need in these uncertain times, when this community is among the highest at risk for COVID-19,” the MDA states in a press release.

The event will feature Matthew B. Harms, MD, the MDA’s medical consultant and a member of its recently formed Medical Advisory Team. He’s also a Columbia University associate professor of neurology and a leading voice in ALS and neuromuscular disease research and care.

Joining the virtual conversation will be Kristin Stephenson, MPH, JD, MDA executive vice president, Chief Advocacy & Care Services. She oversees the nonprofit organization’s Care & Clinical Services division, which includes the MDA’s Care Center Network, National Resource Center, and Care & Clinical Services field team. Stephenson also leads the MDA’s Public Policy & Advocacy department.

“While precautions for cancer patients, older adults, and those with conditions that affect respiratory health exist, there is a lack of information specific to people living with ALS, and their caregivers,” the MDA said. “This conversation and Q&A aim to bring those concerns to light.”

The event is accessible here. A video recording will be available for viewing on the MDA’s COVID-19 resource page, which will also regularly update patient and caregiver guidelines.

The Muscular Dystrophy Association is one of the largest funders of ALS research and care, and offers virtual programming, advocacy, and resources including facts about ALS.

ALS is a progressive neuromuscular disorder that is estimated to affect 5 of every 100,000 individuals in the United States, where roughly between 15,000 and 20,000 people live with the disease.