May 05 2025
Wake Up Narcolepsy 2025 National Summit Recap
h in News
The Wake Up Narcolepsy (WUN) 2025 National Summit took place on April 26th, at the Hilton Durham Near Duke University in Durham, North Carolina!
Photography: Carl Ward Photography
Left: In-Person Attendees; Right: WUN Staff Members
Attendees from near and far traveled to join us in-person and those who were unable to make it tuned in virtually! Those living with sleep disorders, their loved ones, healthcare professionals, sponsors and staff built connections throughout the event and were able to ask questions about relevant topics in the community.
All sessions, except the support groups, were recorded and are available now on WUN’s website or YouTube Channel.
The night before the main program, we had our Welcome Event. There were opportunities to complete activities to win WUN prizes, converse with other attendees and discuss what they were looking forward to for the next day. Cara Weaver, WUN Manager of PR & Communications, also shared her story, mentioning that the understanding she found when attending the 2023 Summit was pivotal in her Narcolepsy journey.
Saturday began with breakfast and exhibitor visits! With nine tables featuring sponsors, partners and community organizations, there were more resources than ever available to attendees. The Teen Room and Nap Room options were also available throughout the day, offering spaces for younger attendees to hang out and anyone who found themselves in need of a quiet place to rest. The Teen Room was filled with activities thanks to Stephanie and Cindy Manuli, who also ran it throughout the day.
Tammy Anderson, WUN Executive Director, gave an introduction to the event, reminding everyone that it is all about connection, learning and discovering. She encouraged people to talk to those around them, especially during breaks throughout the day, and noted the wealth of knowledge present.
The first presentation was from our keynote speaker, Aatif Husain, MD, speaking on “Understanding Narcolepsy: Myths, Facts & Latest Research.” Following this were our two featured speakers: Shelby Harris, PsyD, DBSM, on “The Importance of Sleep Hygiene: Best Practices for Narcolepsy Care,” and Luis Ortiz, MD, on “Excessive Daytime Sleepiness: Clinical Insights & Personal Strategies.”
Photography: Carl Ward Photography
Left: Dr. Husain, Keynote Speaker; Middle: Dr. Harris, Featured Speaker; Right: Dr. Ortiz, Featured Speaker
After a short lunch break, sessions returned with the People with Narcolepsy (PWN) Perspectives Panel, moderated by WUN Board Member, Nicole Jeray, and featuring Monique Myers, Rorey Smith and Phebe Ciemny! The final part of our recorded sessions, the Ask the Experts Interactive Discussion, followed. After seeing more and more questions arise for speakers at each event, this discussion was built to allow the audience to decide what they want to hear about. Nicole Jeray moderated the discussion featuring Dr. Husain and Dr. Ortiz.
Tammy then returned to the stage to recognize our volunteers in attendance and share information about the new WUN Community Catalyst program for those looking to get involved. There were also prize drawings for those who visited all the exhibitor tables and completed their bingo card.
Photography: Carl Ward Photography
Left: PWN Panel; Right: WUN volunteers with their certificates of recognition
Each year, the event ends with support groups for in-person attendees. For many, this is where they are able to find the most understanding and express their thoughts from the long day of presentations. It’s also the first time a lot of people have met others who share the same diagnosis. The groups were divided into PWNs led by Kevin Smith, loved ones led by Jenny Rose and teens led by Stephanie Manuli. It’s the perfect way to end the day and leads well into the option for people to join online support groups year-round.
Thank You to our Sponsors!
Diamond Champion Sponsors – Avadel Pharmaceuticals
Gold Champion Sponsors – Harmony Biosciences & Jazz Pharmaceuticals
Silver Champion Sponsors – Centessa Pharmaceuticals
Welcome Event & Keynote Sponsors – Takeda
Exhibiting Sponsors – Alkermes & Axsome Therapeutics
Exhibiting Partners – SleepWorld Magazine
Thank you also to:
All of our amazing speakers, facilitators, volunteers, board members, as well as Events by Alli C, Carl Ward Photography and the Hilton Durham Near Duke University for hosting us!