On a Tuesday evening, Sarah Ogden, 42, settles into a comfy chair in her living room. Twice a week, Ogden logs on to Zoom to take free mindfulness classes with the Miles for Migraine community. Tuesdays are for yoga; Thursdays are for art therapy. It's a routine that Ogden, who has chronic migraine and is on disability, says she's established ever since the COVID-19 outbreak earlier this year. "Migraine can be debilitating and isolating," she says. "Even before the pandemic, it was often difficult to show up anywhere in person."
Engaging virtually has been a boon for Ogden, who lives in Reading, PA, with her boyfriend, two housemates, and her cat and dog. "I feel like I get the same sense of community as I would in an in-person class," says Ogden. "But it has all the convenience of being at home, so if I suddenly feel unwell, I can lie down on the couch if I need to."
For 28-year-old Devin Shuman, a genetic counselor in Las Vegas who has a mitochondrial disease, her Friday night Zoom calls with teens and young adults in the United Mitochondrial Disease Foundation (UMDF) community are the highlight of her week. "It's essentially a happy hour without the drinks," says Shuman, who's a UMDF teen and young adult support ambassador. "We chat about everything and anything—our lives, jobs, and health. It's a safe way to catch up and connect." Sometimes her African gray parrot makes an appearance.
COVID-19 has transformed how not only companies but also nonprofit patient organizations do business. Before, they relied on in-person conferences, races, and other events to drive awareness, fundraising, and engagement; now they use videoconference calls, telemedicine, webinars, and social media to connect with their communities. "COVID-19 caused shutdowns nationwide, but people still need help," says Chris Schneider, director of communications at the Alzheimer's Foundation of America. "It's important to be adaptable to continue making a difference in their lives."
The small but mighty staff of the Charcot-Marie-Tooth Association (CMTA)—with the help of an army of volunteers—moved its 2020 activities online, including 70 support and education group branches across the country, more than 40 annual fundraising events, and a patient-family conference.
It even made Camp Footprint, a weeklong summer camp for kids with CMT, virtual. To prepare, staffers shipped "camp-in-a-box" packages—filled with blankets, lanterns, chalk, paint supplies, and other items needed for camp activities—to all the youngsters. "It was surprising how successful it was," says Laurel Richardson, director of community outreach for the association. Every day 50 to 70 campers and counselors joined each activity, be it painting, chalk wars, making s'mores, or something else. "It speaks to how special this camp is and how much these kids need it, because they rarely meet other kids who have CMT. Camp is a gift."
More Options
For some patients, going online has been empowering. "The added accessibility [of classes from Miles for Migraine] has made me more adventurous," says Ogden. She started exploring how to practice yoga safely and now does it more regularly.
Shuman, who established the Friday UMDF Zoom calls for teens and young adults, says, "Having that weekly connection and creating something fun and exciting—even during a pandemic—has broadened my friendship group and cemented some new ones." She even planned a Halloween costume contest, a "mito" prom, and trivia nights for the group.
"We've always focused on frequent and thoughtful communication with our community—pandemic or not," says Brian Harman, president and CEO of the UMDF. "We have important information to share, and we're aiming to fund the best research in the world, so we need to communicate effectively. I think the pandemic has inspired us to refine that."
Even walkathons and other benefit events have shifted to cyberspace. The Parkinson's Foundation's signature fundraiser, Moving Day USA, invited supporters to listen to inspiring stories and follow exercise demonstrations online, with the option to take safe walks in their neighborhoods as individuals or members of a team.
The Foundation for Peripheral Neuropathy's "Run the L" Challenge encouraged participants to run, walk, or wheel the length of Chicago's elevated train system—131 miles—anywhere in the country over eight weeks. Similarly, Miles for Migraine converted 22 of its 25 Run/Walk/Just Relax races to virtual experiences: People held races of their own with family and friends and submitted photos; those who weren't up to walking or running outside posted photos of themselves doing something to "just relax"—such as wearing a clay facial mask, drawing, or reading a magazine. Ogden hosted a socially distanced hike in conjunction with a virtual event, complete with a bar for making trail mix. "We had a really fun COVID-safe day," she says.
At the Alzheimer's Foundation of America, more than 285 therapeutic programs—chair yoga, movement and dance classes, virtual tours of aquariums and nature centers, sensory craft sessions—have been created to help patients and caregivers stay active and engaged while at home. They are all free and posted on the foundation's website and Facebook page.
The Muscular Dystrophy Association (MDA) co-hosted a Facebook Live Q&A with the National Alliance on Mental Illness to address mental health among neuromuscular patients and their caregivers. "We know there are heightened feelings of isolation and stress because of the pandemic, so the MDA is working to build up our community, whether through fundraising events or virtual game nights," says Lynn O'Connor Vos, president and CEO. "Our organization felt it was critical to introduce extra activities at this time."
The MDA also has promoted telemedicine—which has been significant to people like Christopher Rosa, who has limb-girdle muscular dystrophy. "It just gives you that extra layer of assurance and comfort," says Rosa, who lives with his family in New York City, where he is an assistant vice chancellor at the City University of New York.
Another upside to going virtual is an expanded audience. The Myasthenia Gravis Foundation of America's annual conference had more than 1,500 participants from 42 countries this year, as opposed to 300 last year, when it was in person. "We plan to always have some form of virtual component to our programs and events moving forward," says Samantha Masterson, the foundation's CEO. "The virtual piece has allowed us to reach further and raise greater awareness, which is good for everyone involved."
The CMTA's annual patient-family conference, which is normally held in the United States, also had an increase in participants from other countries, including India, Pakistan, Egypt, and Italy.
Reaching Others
Many organizations plan to hold hybrid events in the future, combining in-person and virtual offerings. "As long as we have access to experts and new research and information and can share that with our patients, we'll continue with our virtual webinars and seminars," says Lindsay Colbert, executive director of the Foundation for Peripheral Neuropathy. "Our mission is to be a place people can turn to for help, guidance, and support," says Schneider of the Alzheimer's Foundation of America. "That's not going to change."
By switching to virtual events, organizations have reached a population that may have been overlooked before. "We've filled a niche we didn't know was there, even without COVID," says Shuman, noting that her weekly Zoom calls will continue into the foreseeable future.
"The virtual world has helped those of us who are often isolated in our homes," Ogden says. "I like feeling anchored to a community. I'm really sad that it took a pandemic to make it happen, but now that virtual events are here, I really hope they don't go away."