2025 Preliminary Schedule
Learn • Connect • Look Toward a Hopeful Future
For almost 40 years, Narcolepsy Network has brought people with narcolepsy and idiopathic hypersomnia (IH) together at this signature annual event. This year we are thrilled to have an incredible team of world class researchers and clinicians to present on topics that are so critical to the changing treatment landscape for all of us managing these chronic hypersomnia disorders. We also have a number of interactive workshops to help you navigate your journey and validate others.
Join us– come connect with others to be seen, heard and understood. Whether you're newly diagnosed or living with narcolepsy or IH for a while, experiencing this weekend is life changing.
So what might you expect?
Learning from leading medical experts on new diagnostic frontiers.
Understanding treatment options and important clinical research that may change the way we treat narcolepsy and IH.
Asking questions and getting answers from medical and patient panels.
Sharing your journey, learning self advocacy and making friends along the way.
Getting validation and understanding in support groups and gatherings.
Socializing at meals, resting in the Sleep Room, and activating your artistic juices or taking a break in our Creativity Room.
Friday, October 24, 2025
WELCOME & NETWORKING
Check-In starts at 3:30 pm
Newcomer Meet & Greet at 5:0O pm
Evening Welcome Reception at 6::00 pm
Saturday, October 25, 2025
PROGRAM 9:00 AM— 5:30 PM
Full Breakfast, Lunch and Snacks!
WELCOME
Keith Harper, President and Amy Kant, Transition Director
Keynote: Hypersomnolence: Frontiers in Diagnosis and Understanding the Patient Journey
Presenter: David Plante, MD, PhD
This session will explore the diagnosis of central nervous system disorders of hypersomnolence. It will address the challenges individuals face in obtaining an accurate diagnosis, including the limitations of current clinical tools and the potential delays in their diagnostic journey. The presentation will also highlight emerging methods to improve diagnostic pathways and outline key areas for future research to advance the field.
Back to Basics: Narcolepsy & IH 101
Presenter: Lois Krahn, MD
Narcolepsy and Idiopathic Hypersomnia are life-long neurological disorders. They have similarities and differences in age of onset, symptoms, coexisting problems and therapies. This presentation will discuss the main features of narcolepsy and idiopathic hypersomnia including the cause, management and available treatments. This session will be a good primer for those not familiar with these rare disorders, and a good refresher of the basics for those of you who are familiar.
Cardiometabolic and cognitive comorbidities in narcolepsy and idiopathic hypersomnia
Presenter: Phyllis C. Zee, MD, PhD
Sleep professionals increasingly recognize that medical, cognitive and psychiatric comorbidities are more common in people living with narcolepsy and idiopathic hypersomnia (IH). Dr. Zee will provide an overview of common comorbidities of narcolepsy and idiopathic hypersomnia, assessment and treatment modalities within the context of these co-morbidities. As well, emerging research also suggests that pathophysiology of narcolepsy type 1 may be mechanistically related to the increased risk for cardiometabolic and cognitive impairment.
Orexin agonists: Looking toward the Future for a New Class of Hypersomnia Therapies
Presenter: John C. Carter, MD
Dr. Carter will explain the orexin system, which regulates the sleep-wake cycle, and discuss the potential role orexin agonists may play in the creation of a new class of therapies for both narcolepsy and idiopathic hypersomnia. He will also discuss published clinical research and the way different orexin agonists may be utilized in the future as interventions that target specific hypersomnia symptoms.
Workshop: Self-Advocacy
Facilitators (TBA)
We each have our own unique journey living with narcolepsy and/or IH, which means that we encounter different challenges. Perhaps your challenge is at home, school, work, or in a relationship? Whatever it may be, it’s helpful that you know how to advocate for yourself and get the support you need. In this interactive workshop, you will have the opportunity to share a challenge you are currently facing, and then practice how to communicate what support you need, with a partner. We want you to come away from this workshop with a renewed sense of hope and courage.
Medical Panel: Looking Toward a Hopeful Future
Facilitator: Dr. Lois Krahn, MD
Panelists: Dr. C. Carter, MD, Dr. Plante, MD, PhD, Dr. Zee, MD, PhD
Living with narcolepsy and idiopathic hypersomnia is a struggle for many, trying to manage excessive daytime sleepiness (EDS) and a variety of secondary symptoms that directly affect quality of life. Join leading sleep researchers and clinicians in this important discussion around where we are today with treatments and where the future may lead us. How do we as medical professionals better support the journey each person has? What listening do we need to do? What further research must be done? These questions matter and will set the stage for Sunday’s interactive workshop on mapping out the journey to diagnosis, and the journey post diagnosis.
PHARMACEUTICAL PRESENTATIONS
Managing Narcolepsy and a Treatment Option
Sponsored by: Avadel
Presenter: Martha Curtin, PA
Martha Curtin PA will discuss strategies for developing a management plan and provide details on a treatment option for excessive daytime sleepiness (EDS) and cataplexy.
Learn About WAKIX® (pitolisant) With Dr. Matthew Davis
Sponsored by: Harmony Biosciences
Presenter: Dr. Matthew Davis
Join Dr. Matthew Davis as he provides an overview of WAKIX® (pitolisant), including clinical trial results and information about the patient support program.
Narcolepsy and OrexiN
Sponsored by: Takdeda Pharmaceuticals
Presented by: Dr. Oliver Sum-Ping
Orexins are neuropeptides that play an important role in several biological functions, particularly the regulation of sleep and wakefulness. This presentation will review orexin’s function, its role in disorders of sleepiness and explore the potential for orexin agonist drugs which aim to replace the function of orexin to treat narcolepsy and idiopathic hypersomnia.
Support Groups throughout the day
People with Narcolepsy & Idiopathic Hypersomnia: Join this facilitated discussion about living with narcolepsy and idiopathic hypersomnia. Discuss challenges, successes, medication and more during this one hour meeting. Space is limited so please register in advance. Due to high demand, we request that you only sign up for one of the scheduled support groups. Please also note preference will be given to those who register in advance.
Parents and Supporters: Join this facilitated discussion about how to support your child who is living with narcolepsy. Discuss challenges, successes, medication and more during this one hour meeting. Space is limited, please register in advance. Preference will be given to those who register in advance.
Creative Corner throughout the day
Are you looking for a fun place to relax and have fun with others? In the Creative Corner, we’ve got coloring, crafts, and more. We’ll also share fun exercises where you can draw or journal about your dreams and future adventures.
Dinner Groups
Let’s go out and get to know each other. We have picked several restaurants easy to walk to and within a reasonable price range where we can enjoy each others company and share our experiences.
Evening Social
It’s time to kick off your shoes, and play a bit at our ever popular evening game night with low key music to entertain us. Enjoy bingo, cards, uno, puzzles, cornhole and more. Saturday night is the perfect time to mingle and relax with friends and make new ones.
Sunday, October 26, 2025
PROGRAM 9:00AM—3:30 PM
Breakfast, Lunch and Snacks!
Welcome & Community Sharing
In this session, we have an opportunity to share our learning from Saturday and what we want to know more about.
Patient Panel: Living with Narcolepsy & Idiopathic Hypersomnia
Facilitator and Participants TBA
Narcolepsy and Idiopathic Hypersomnia both come with a wide range of symptoms which can make even the most routine tasks feel overwhelming. Listen to a panel of people with narcolepsy as they discuss their diagnostic journey and the journey afterword. Learn how they navigate their lives, both their challenges and their successes.
Interactive Workshop: Exploring your Journey
Facilitators TBA
Mental Health, Management & Tools
Presenter TBA
Workshop: How do you start and run a peer-led support group?
Facilitated by Keith Harper, President
Support groups all day
Creative Corner all day
PHARMACEUTICAL PRESENTATIONS
Jazz Pharmaceuticals: TBA Presenter & Topic
Conference Closing & Community Sharing
In this session, we have an opportunity to connect and share our learning and experience of the 38th Annual Conference.