Attendees traveled from near and far to join us in person and online for the 2025 Wake Up Narcolepsy National Summit in Raleigh-Durham, N.C. Hosted in a different city each year, the summit provides a place where industry professionals, clinicians, individuals with narcolepsy, and family members can come together and share vital knowledge and perspective.
We carefully craft the agenda to include expert clinical presentations, personal stories from people living with narcolepsy, and support groups for those diagnosed with narcolepsy and their loved ones. This year, the inaugural “Ask the Experts” discussion wrapped up the presentation portion of the event, allowing audience members to lead the conversation with their own questions for the speakers.
This new addition to the program was inspired by the countless questions attendees raised after presentations in years prior. Instead of hosting another panel on a single, predefined topic, we wanted to create an open forum where every participant had the opportunity to explore the issues they wanted to learn more about.
“It’s really important to have conversations outside of a clinic (or) hospital setting where people are free to really talk openly about their conditions in a more comfortable environment and really get a sense of what’s going on in the field scientifically and for real people,” said keynote speaker Aatif M. Husain, MD, division chief of Epilepsy, Sleep, and Neurophysiology in the Department of Neurology at Duke University Medical Center in Durham.
The National Summit is one of the most meaningful events on our calendar because the knowledge gained and the connections made during this one-day event have a lasting impact. We hear this again and again from sponsors, exhibitors, community members, and health care professionals long after they leave the summit.
Here are three lessons that resonated most with this year’s attendees:
Don’t Underestimate the Power of Community
When you’re first diagnosed with an invisible, isolating disorder like narcolepsy, it can feel like no one truly understands what you’re going through. Media representations of sleep disorders are often harmfully inaccurate, adding to the general public’s misconceptions. That’s why meeting others who “get it”—whether they have the same diagnosis or work in the field—is so meaningful.
At the summit, people quickly discover they don’t have to explain their condition. There’s support built into the programming and understanding from each person attending. No one bats an eye if someone needs to walk around in the middle of a presentation or stop at the Nap Room if they’re in need of a quiet place to rest.
Individuals may start with connecting to others in online support groups before meeting up in-person at events like the summit, which often leads to friendships that transcend distance even after the event is over.
We always close out the event with an in-person support group for people with narcolepsy. As one support group facilitator noted, each time someone would share a frustration, joy, success, or fear, a majority of those sitting around the circle would nod in agreement.
“The impact is so validating for anybody with narcolepsy to just be with a group of people that understands the struggles in the same room or virtually,” said Monique Myers, who shared her experience on the People with Narcolepsy Perspectives Panel. “You can’t even put it into words.”
Loved Ones Benefit from Connection Too
Something we see attendees learn each year is that it’s not just the individual with the diagnosis who needs support. Parents, caregivers, partners, siblings, and other loved ones face their own challenges with narcolepsy and finding connection can be crucial.
Our in-person support group for loved ones offers a safe space where participants can voice emotions that they’re used to holding in. In their daily lives, these loved ones may focus solely on supporting the diagnosed individual and try to hide the toll that diagnosis takes on them. This is one of the most important reasons we hold separate support groups for those diagnosed and loved ones.
While apart, each can be honest about how the disorder affects them and find relief in relating to others or receive practical advice on issues they may be having. This openness can be transformative. It can help participants feel better equipped to support both themselves and their loved one and also given them a better understanding of when they need to seek help.
There’s Always More to Learn
Each story of narcolepsy is unique, and everyone brings their own expertise to the conversation. Health care professionals contribute clinical knowledge, patients offer invaluable insight by sharing their lived experience, and industry professionals provide a window into treatments and ongoing research.
Every summit offers new learnings—whether someone with narcolepsy type 2 learns more about cataplexy’s impact on people with narcolepsy type 1, or attendees who received a relatively quick diagnosis discover it can take years in some cases. Even experienced specialists can leave with new ideas and perspectives they can apply to improve care for their patients.
Some attendees don’t initially understand the extent to which health care providers can be involved in their journey, especially if they haven’t had the best experience with their own provider. Seeing a doctor at an event can feel intimidating, but breaking down the barriers and having honest conversations really helps us all move the field forward together.
Save the Date
Next year’s summit will be held on April 25, 2026, in the Chicago area.
By Cara Weaver
Source: SleepWorld Magazine Jul/Aug 2025
Cara Weaver is the manager of public relations and communications at Wake Up Narcolepsy and is also a person with narcolepsy type 2.
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