Enhancing Community In Person and Online

At Wake Up Narcolepsy (WUN), our hybrid approach to programs and events has transformed and expanded how we connect with people affected by narcolepsy. For those living with rare or misunderstood disorders like narcolepsy, connecting with others is often life-changing. It provides a sense of belonging that eases some of the isolation that is so often felt by those living with this condition.

The Benefits of Online Support

We discovered the need for online support when we heard from community members about the lack of opportunities they had to connect with others. Whether these were people living with the disorder themselves or they were caregivers for someone with narcolepsy, they found they had very few people who could relate to the unique challenges they were facing.

In 2018, WUN launched free targeted online support groups for people living with narcolepsy via a secure platform called HeyPeers. Since then, the program has grown to include nine groups that meet weekly, with various meeting times and days that ensure people can find an option that fits their schedule and their needs. There’s even a Saturday meeting that proves convenient for international attendees.

Some are general groups, and others have a targeted focus, like comorbidities, pregnancy and parenting with narcolepsy, navigating college and careers with narcolepsy, living with narcolepsy as a member of the LGBTQIA+ community, and parents and loved ones of people diagnosed with narcolepsy.

People can attend these online meetings from anywhere in the world. Not having to travel improves access for many people who may not otherwise be able to attend for a variety of reasons, including transportation limitations and costs or even low-energy days. These might be the days when they need the support the most, but can’t get to a physical meeting. With online support groups, we’re literally able to meet more people where they are.

Attendees can provide anonymous feedback each time they attend, which helps us continually improve and refine the groups to better serve the community. It’s clear from the feedback we’ve received that these groups have been a lifeline for many participants. Their words highlight this impact:  “These are essential to my health.” “It was helpful, and what I needed at the moment to get to tomorrow.” “I have never felt so understood or part of a community ever.” “I see this becoming a new support system for me, which I really need. Thank you.”

Expanding Virtual Offerings

After seeing this success, WUN has expanded our virtual programming and events beyond support groups. Launched in 2022, our Brown Bag Webinar series provides expert information on topics that are frequently asked about. Eight webinars are presented each year, with the opportunity for community members to participate in a Q&A at the end. The live webinar series allows the information to reach far beyond an in-person event, and the recording is shared afterward for anyone who couldn’t attend.

Virtual programming has also given us more opportunity to interact with our global community. In 2024, WUN took our World Narcolepsy Day celebrations to the next level with “Worldwide Step Up For Sleep.” People across the globe participated. Together, the community raised money and awareness while getting active, sharing updates, and cheering each other on.

The Value of In-Person Connection

Despite the success of virtual meetings, getting together in person has undeniable benefits. A 2023 study conducted by researchers at Yale University measured brain activity to determine whether virtual meetings can engage people to the same degree as face-to-face interactions.¹ A Forbes article published the same year summarized their findings succinctly: “Virtual meetings produced substantially less activity in brain areas associated with facial processing and social interaction.”

This doesn’t mean virtual meetings aren’t engaging, it simply demonstrates that one cannot replace the other. What virtual options lack in heightened engagement levels, they make up for in accessibility.

As we realized that people with narcolepsy needed to build off support group connections, we discussed how we could help them form local communities. At the end of 2023, we introduced WUN Town Halls—community events that could take any shape based on attendees’ needs.

In 2024, 12 town hall events took place across North America. People who had previously connected only online were finally meeting in person. Many attendees exchanged contact information and planned future gatherings, forming local support systems that continue to thrive between events.

We’ve also started to see international presence at in-person events, including a volunteer who came all the way from Ireland for our Family Weekend in Kentucky. It was their first time meeting other people who shared and understood their experience, and they’re eager to get involved with more events in the future.

Striking a Balance

Because virtual and in-person settings each have their pros and cons, we’ve taken a hybrid approach to give our community the best of both worlds.

Starting in 2022, we decided to make the WUN National Summit a hybrid event to accommodate as many people as possible. Each year, the Summit grows as we learn new ways to make the conference more interactive and engaging for those attending remotely. The presence of both options allows maximum accessibility to the community, meeting needs more effectively.

We’ve released the schedule for this year’s WUN National Summit, which will take place on April 26, 2025, online and in person near Raleigh-Durham, N.C. This no-cost, one-day hybrid summit is for people with narcolepsy (or idiopathic hypersomnia), their families, educators, clinicians, researchers, and those just looking to learn more. Visit tinyurl.com/wakeupnarcolepsy2025 for more information.

By Cara Weaver

Source: SleepWorld Magazine

References

1. Zhao N, Zhang X, Noah JA, Hirsch J. Separable process for live “in-person” and live “zoom-like” faces. Imaging Neurosci (Camb). 2023;1:1-17.
2. Dooley R. Virtual meetings are less engaging than in-person, study confirms. Forbes. December 12, 2023. Accessed January 26, 2025. https://www.forbes.com/sites/rogerdooley/2023/12/12/zoom-meetings-less-engaging-than-in-person-brain-study-confirms/