2023 Preliminary Schedule
YOUR JOURNEY THROUGH ALL STAGES OF LIFE
Come join us at our 37th Annual Conference where we will continue our long tradition of celebrating our community connection. This year, our content will focus on living with Narcolepsy & Idiopathic Hypersomnia at all stages of life.
Friday, September 29, 2023
Welcome & Networking
Check-In
Newcomer Meet & Greet
Evening Welcome Reception
Saturday, September 30, 2023
8:00 Breakfast
Program 9:00am—4:30 pm
Welcome Keynote: Living with Narcolepsy & Idiopathic Hypersomnia: Pathogenesis, Diagnostics and Co-existing Disorders
Presented by Chad Ruoff, MD
Dr. Ruoff will discuss theories behind the pathogenesis of both Narcolepsy and Idiopathic Hypersomnia and explore advances in diagnostics, and what the future may hold. These advances may make it easier to diagnose these rare disorders and help in shortening the time to diagnosis. This session will also exploring co-existing conditions that are more prevalent in people with 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 indicated in registration that they plan to sign up.
Parents: 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 indicated in registration that they plan to sign up.
Creative Corner throughout the day
Are you young and looking for a fun place to relax and have fun with others? Well 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.
Back to Basics: Narcolepsy & Idiopathic Hypersomnia (Formerly Narcolepsy 101)
Presented by 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 and management. 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
Workshop: Self-Advocacy
Facilitated by Amy Kant, Transition Director
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.
Get Moving! (Nia®)
Facilitated by Sue Dambrauskas
Discover which types of activities are recommended for your health and well-being, including boosting some aspects of cognitive function. Plus, practice the key move that can help you prevent injuries from falling. Using the Nia® Technique, a specially designed playlist, and low-impact, simple movements, together we’ll find the fun in getting up and getting moving. Nia is a mind-body fitness and lifestyle practice that blends dance, martial arts, and healing arts to condition the body and mind, and to release and express our emotions and creative spirit. This session is for all ages and fitness levels. Please wear comfortable clothes that you can move in.
Lunch
Exploring the Pediatric Journey for Children with Narcolepsy & Idiopathic Hypersomnia
Presented by Rakesh Bhattacharjee, MD
This session will explore the unique complexities of navigating the developmental phases of a child with somnolent disorders including narcolepsy and idiopathic hypersomnolence. Common obstacles arise from awareness of these condition, lifestyle and psychosocial issues and all are factors in recognition and diagnosis, determining medication and treatment protocol. A strong relationship of the caregiver, child and healthcare provider is critical in developing an ongoing and effective care plan.
Navigating Transitions for Young Adults
Presented by Shelley Hershner, MD
Narcolepsy and idiopathic hypersomnia commonly emerge during adolescence or early adulthood, potentially affecting various pivotal life transitions in young adults. This session highlights effective strategies for navigating and advocating within key areas of education and career, driving, medication and treatment, long-term health management, independence, and self-advocacy.
Workshop: Lifestyle Tips and Tricks
Facilitated by Sharon O'Shaughnessy, Board Member
Are you looking for lifestyle tips and tricks on how to manage your narcolepsy or idiopathic hypersomnia? Then join us for a lively information sharing session, where we will discuss tools such as sleep diaries, sleep hygiene, exercise, nutrition, and meditation! Bring your questions and ideas—we want to hear from you!
Workshop: Patient Voice and Supporter Roundtables
Facilitated by Amy Kant, Transition Director
Do you want to share your voice in a focused peer-to-peer dialogue? Want to share insights that may help Narcolepsy Network educate and support our community? Are you interested in research? Then join us in these facilitated roundtable discussions. In advance at registration, we will provide you with questions to choose from for your discussion group participation. You will have the opportunity to bring your ideas and learn from others. This session is voluntary for people with narcolepsy and/or idiopathic hypersomnia, and parents and supporters, and requires a consent form onsite.
Patient Panel: Living with Narcolepsy & Idiopathic Hypersomnia
Moderated by Chad Ruoff, MD
Panelists: Hurlicia Hardeway, Ishika Sachdeva, & Jelissa Suarez
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 the five core symptoms, how they navigate their lives, both their challenges and their successes.
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.
Pharmaceutical Presentations
Avadel: A New Treatment for EDS and Cataplexy in Adults with Narcolepsy
Maggie Lavender, MSN, APRN, FNP-C
Hear Maggie Lavender provide an overview on a new treatment for EDS and cataplexy in adults with narcolepsy.
Harmony: Exploring WAKIX® (pitolisant)
Dr. Debra Stultz
Hear Dr. Debra Stultz give an introduction to WAKIX, including it’s FDA-approved use, how it’s thought to work, what to expect with treatment, and tips for talking with your healthcare provider.
Jazz Pharmaceuticals: Introducing XYWAV
Jessica Sacks, PhD
Sunday, October 1, 2023
8:00 Breakfast
Program 9:00am—3:30 pm
Welcome & Community Sharing
In this session, we have an opportunity to share our learning from Saturday and what we want to know more about.
Support groups all day
Creative Corner all day
Panel: Navigating Clinicians & PWN/IH Relationships
Moderated by Amy Kant, Transition Director
Panelists: Dr. Shelley Hershner, Dr. Lois Krahn, Olivia LaGrone, & Jelissa Suarez
What is the approach you take when talking with your sleep and/or primary care doctor? What is the approach your sleep doctor takes? Are you in sync? This session will focus on a lively discussion around how to develop a supportive and productive partnership with you and your doctor. Dr. Lois Krahn, and Dr. Shelley Hershner will provide their take on strategies for serving their patients. We will also hear the patient perspective as well, and make sure there is plenty of time for your questions.
Narcolepsy & Idiopathic Hypersomnia in Later Years
Presented by Michael Thorpy, MD
Narcolepsy & Idiopathic Hypersomnia are a life-long disorder and as people age they are liable to develop an increasing number of other medical and psychiatric disorders that can affect the management of the patient. Cardiovascular, respiratory, renal and metabolic disorders are common and can affect the patient's management. In addition, psycho social factors such as retirement, disability, and living alone will affect the patient's ability to control the symptoms of narcolepsy. These situations and other related factors will be explored. We will have time to make sure your questions are answered.
Workshop: How do you start and run a peer-led support group?
Facilitated by Keith Harper, President
Do you want to start a support group for people with narcolepsy (PWN), idiopathic hypersomnia (IH), or supporters of PWN and IH? Learn how to develop a purpose, iron out the logistics, publicize your group, develop a program, and facilitate a peer-led group. We’ll cover everything you need to know to start a support group in this session.
Lunch
Understanding Medications
Presented by Michael Thorpy, MD
The medications to treat narcolepsy and idiopathic hypersomnia are varied in their activity. The mechanism of action can be very different and they can affect different brain receptors. Consequently, the medications can have diverse adverse effects and can interact with many medications taken for other reasons. These differences between medications will be discussed.
Medical Panel
Shelley Hershner MD, Lois Krahn MD, Michael Thorpy, MD
Each year, we host our medical panel. Leading sleep doctors will exchange ideas on topics ranging from diagnosis to varying approaches to clinical treatment, methods for evaluating patients, classes of medications, and more. For years, this has been one of our most popular panels. We leave plenty of time for questions.
Pharmaceutical PresentationS
Takeda: Narcolepsy and Orexin: Pathology and Promise
Dr. Oliver Sum-Ping
Orexin is a neuropeptide that plays an important role in several biological functions, especially the regulation of sleep and wakefulness. This presentation will review orexin’s function, its role in narcolepsy and explore the potential for orexin agonist drugs which aim to replace the function of orexin to treat narcolepsy.
Conference Closing & Community Sharing
In this session, we have an opportunity to connect and share our learning and experience of the 37th Annual Conference.