Patient Advocate Reflections from SLEEP 2026
This year, WSCN proudly sponsored three patient advocates at the SLEEP 2026 conference. Our aim was to amplify the voices of those living with sleep disorders and keep patient perspectives at the heart of conference conversations. Upon returning, the advocates were eager to share how the conference highlighted both the latest advances in sleep medicine and the sense of hope and connection that comes from learning, sharing, and advocating together.
WSCN is grateful to Centessa for the sponsorship of the Pathways to Vitality Scholars Network, which supported patient advocate attendance at the conference.
Takeaway 1: Progress in Narcolepsy and Sleep Disorders
“Attending SLEEP 2026 was both encouraging and inspiring,” says Tara O’Connor, one of our patient advocates. “One of the things that surprised me most was seeing how much attention is now being given to narcolepsy, idiopathic hypersomnia, and insomnia. Historically, many discussions at sleep conferences seemed heavily focused on sleep apnea, so it was exciting to see greater recognition of other sleep disorders and the unique challenges faced by those living with them.”
Tara O’Connor (left) with fellow patient Sol Briggs at the WSCN booth – where many discussions were shared during SLEEP 2026
A central theme echoed by all three advocates was the hope inspired by advances in research on narcolepsy and sleep disorders.
“One of the most exciting things I learned was about the new orexin agonist medications currently moving through the pipeline for FDA approval. For decades, narcolepsy treatment has largely focused on managing symptoms,” says Rachel Nesmith, another patient advocate. “We have relied on stimulants, wake-promoting medications, nighttime treatments, antidepressants, and lifestyle modifications to help us function. While these treatments can be life-changing, they do not address the root cause of narcolepsy.”
SLEEP 2026 generated a palpable excitement about cutting-edge treatments, including the orexin agonists, in late-stage development. “Hearing researchers and physicians discuss medications designed to replace or mimic [the neuropeptide] orexin felt revolutionary,” Rachel continued. “For the first time, I could envision a future where treatment may target the biological cause of the disease. Listening to presentations about these emerging therapies gave me hope not only for myself but also for future generations diagnosed with narcolepsy.”
This progress represents a broader transformation in sleep medicine, where the needs and experiences of patients are now being prioritized by researchers, clinicians, and industry. At WSCN, we are thrilled to see patient voices being elevated and centered in healthcare practice.
Rachel Nesmith (left) with Lola Broomhall, WSCN Program Manager, sharing a moment together at the WSCN booth.
Takeaway 2: The Importance of Community and Shared Experience
SLEEP 2026 brought together professionals, researchers, and advocates from across the sleep industry. It offered attendees an opportunity to share knowledge, connect, and discover advances in sleep medicine. Our advocates valued that sense of community.
“What surprised me most,” says Kerly Bwoga, our third patient advocate, “was how open and welcoming everyone was, including patients, doctors, and researchers. The most meaningful conversation I had was with a fellow patient and researcher who developed narcolepsy after a bus accident. It was validating to see my own journey reflected in hers, especially since I had a head injury as a child.”
Kerly Bwoga (center) in discussion with a conference delegate, alongside WSCN COO Meg Langley (at left).
At SLEEP 2026, the sense of community among patients, caregivers, clinicians, and advocates was undeniable. For many attendees, connecting with others who truly understand the daily realities of living with narcolepsy and other sleep disorders was both validating and uplifting.
“There is something powerful about being surrounded by people who do not need an explanation for what cataplexy feels like or why excessive daytime sleepiness can be so disabling,” explains Rachel Nesmith.
Sharing stories of perseverance and resilience helped reduce feelings of isolation and foster a spirit of mutual support. As the advocates emphasized, new treatments and research are important, but so are ongoing support and connections within the sleep disorder community.
“Community is the foundation: new treatments are vital, but so is the ongoing support, awareness, and real connection we share as a community.”
– Kerly Bwoga, WSCN Patient Advocate
Takeaway 3: The Value of Patient Voices in Research and Education
The growing recognition of patient voices in research and education was another highlight of the conference. Advocates shared how meaningful it was to participate in discussions with researchers, clinicians, and industry partners, where their lived experiences could directly inform studies and the development of new treatments.
Opportunities for patients to join roundtable conversations and panels underscored the shift toward more collaborative, patient-centered care. As Kerly emphasized, “We need to shift how clinicians are trained by incorporating patients into their education.”
By involving patients more deeply in research and medical training, the sleep medicine community is building stronger understanding and empathy, leading to care that better addresses the real needs of those living with sleep disorders.
“WSCN’s generous support made it possible for me to attend #BeyondSleepy and SLEEP 2026, where I learned about promising new treatments and ensured the patient voice was heard. Their investment gave me hope, knowledge, and the opportunity to advocate for better care for everyone living with narcolepsy.”
– Rachel Nesmith, WSCN Patient Advocate
Looking to the Future
“My biggest takeaway from SLEEP 2026 is that there is real progress happening. Narcolepsy and idiopathic hypersomnia are being discussed more frequently, more research is being conducted, and more people are paying attention to the needs of patients living with these conditions.”
– Tara O’Connor, WSCN Advocate
Looking to the future, there is much optimism in the sleep community. Advances in research and the development of new treatments inspire hope for more effective therapies and better patient outcomes. Together, the community can help shape a future with better care and quality of life for people with narcolepsy and other sleep disorders.
Pathways to Vitality Scholars Network
WSCN’s Pathways to Vitality Scholars Network is a global scholarship and fellowship initiative designed to empower emerging and established voices in wellness, sleep, and circadian health. This program bridges the gaps between knowledge and access, science and practice, day and night, local and global, helping individuals expand their learning, share their insights, and lead transformative change in health and wellbeing.
To find out more about our Pathways to Vitality Scholars Network and how to apply for a scholarship, reach out to us via email: info@sleephealth.org