WSCN attends #BEYONDSLEEPY 2026

Hosted on June 13–14, 2026 by the Hypersomnia Foundation in Baltimore, Maryland, USA,
#BeyondSleepy is an event designed specifically for individuals living with idiopathic
hypersomnia, narcolepsy, and Klein-Levin Syndrome. The annual event provides education,
research updates, networking, and community-building opportunities, bringing much-needed
support to people living with these rare disorders, as well as their caregivers and
clinicians.

WSCN attended the event to connect with the community, elevate patient voices, and learn
about how to further support the sleep and circadian ecosystem.

Program Manager Lola Broomhall and Patient Advocate Tara O’Connor at the WSCN booth.

What was our experience?

We sent three staff members to host our booth, and provided funding for three patient
advocates to attend the event: Kerly Bwoga, Rachel Nesmith, and Tara O’Connor.

Over the two days we enjoyed an array of touching conversations, deep learning, and some
tough realisations about how difficult it can be to live with a hypersomnia disorder. It
solidified WSCN’s passion for supporting patients in this space, and also for elevating
their voices in research, medical education and policy making.

We met some incredible clinicians and researchers who are working hard to advance treatment
options for hypersomnia disorders, and felt uplifted by how much progress is being made.

We heard about how patients can effectively advocate for themselves in a keynote talk from
our own WSCN Board Chair, Dr Anne Marie Morse. We also learned about how wearable
technology and new pharmaceuticals are improving quality of life for people—with some
exciting new advances in drugs called orexin agonists, which are due to enter the market
soon. These drugs assist in restoring the sleep-wake rhythm for people with narcolepsy
type 1, helping them to maintain wakefulness during the day, as well as possibly helping
with a cognitive symptom called brain fog.

Dr Anne Marie Morse giving her keynote “Speaking to your Provider”.

Patient Advocates – Supported by WSCN

We loved witnessing our patient advocates at #BeyondSleepy. Seeing them in action reinforced just how important our Scholarships and Patient Support Programs really are. Our three advocates spoke out in plenary sessions, networked with medical providers, joined important discussion groups, and spent time building community and sharing experiences—actions that are deeply impactful and essential for making positive change.

As Tara O’Connor reflected:

“Thanks to WSCN’s support, I was able to attend #BeyondSleepy2026, share the patient’s perspective, participate in a roundtable discussion, and connect with clinicians, researchers, and fellow advocates. Advocacy is something I care deeply about, and this support allowed me to continue doing work I love while representing and supporting the sleep disorder community.”

— Tara O’Connor

Tara in action with our COO Meg Langley.

Patient Advocate Kerly Bwoga raising important questions during a keynote session.

Kerly Bwoga

“I’m so grateful for the opportunity to attend #BeyondSleepy in Baltimore. The key takeaway is that 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

Key Takeaways

• Hypersomnolence disorders are relatively rare, but they cause significant disability and have a profound impact on the people living with these conditions.
• The delay in receiving a correct diagnosis is due to many factors, including the “invisibility” of hypersomnolence disorders, mislabeling of symptoms, lack of medical practitioner education, and difficulty accessing appropriate clinical testing for this patient population.
• WSCN will continue to support patient advocates through our support programs so that patient voices are heard, understood, and integrated into all aspects of healthcare—from policy, to research, and real-world practice.
• There is renewed hope for a better quality of life through the development of targeted pharmaceutical therapies. These advances will be most effective when patient voices remain integrated throughout research, clinical development, and policy making.
• WSCN connected with several organizations making a meaningful impact in the hypersomnolence disorders space, and we look forward to following their work and building lasting network connections.

In Summary

#BeyondSleepy 2026 was a touching, educational, and inspirational event. Our WSCN team members left with valuable learnings, meaningful insights, new connections, and renewed motivation to continue making a difference in the sleep and circadian ecosystem.

We were incredibly proud to see our Patient Advocates in action, demonstrating the importance of ensuring patient voices remain at the center of research, education, advocacy, and healthcare policy.

We are already looking forward to returning for the next #BeyondSleepy and continuing to support the hypersomnia community through collaboration, advocacy, and meaningful partnerships.