Earlier this month, 586 people attended the Hypersomnia Foundation 2022 #BeyondSleepy Conference for people with idiopathic hypersomnia (IH) and related sleep disorders, such as narcolepsy and KLS, and their supporters. Held in Charlotte, North Carolina, 140 people attended the conference in-person and 446 participated virtually.
A poolside Meet & Greet kicked off the three-day event giving attendees the opportunity to see old friends and make new ones, understanding that they are not alone in their hypersomnia journey. Over the next two days, 30 speakers and panelists presented on a variety of topics, ranging from current and new treatments for IH to upcoming research into IH and other sleep disorders, detailed information about preparing for hospitalization or anesthesia, panel discussions about accessing insurance and affordable prescriptions, and diversity, equity & inclusion in health care for people with rare sleep disorders.
Representatives from Avadel Pharmaceuticals, Harmony Biosciences, Jazz Pharmaceuticals, and KemPharm led an industry roundtable discussing current clinical trials and research directions. Each day included breakout sessions and small group discussions for people with a sleep disorder and caregivers/family members. Topics included parenthood, pregnancy, and hormonal therapy for people with hypersomnias, coping strategies for living with a sleep disorder, preparing for hospitalization or anesthesia, and what to expect if selected to participate in a clinical trial.
Some of our key speakers and the topics of their presentations included:
- David Rye, MD, PhD, discussed “Current Research: Searching for a Biomarker for Idiopathic Hypersomnia”
- Lynn Marie Trotti, MD, MSc, shared information on “Current Treatments”
- Thanh Dang-Vu, MD, PhD, presented “Neuroimaging Consortium on Hypersomnolence”
- Jason Ong, PhD, DBSM, discussed “Learning How to Cope: Using Cognitive-Behavioral Therapy for Idiopathic Hypersomnia and Narcolepsy & Depression; Finding a Therapist”
- Kiran Maski, MD, MPH, presented “Diagnostic Delays and Solutions for Pediatric CNS Disorders of Hypersomnolence”
- Yves Dauvilliers, MD, PhD discussed “Current & Future Research Directions”
- Anne Marie Morse, DO, presented “Education, Empowerment, and Activation”
- KC Davis, author, and founder of the mental health platform “Struggle Care,” discussed “Struggle Care: How to Keep House While Drowning”
Through a post-event survey, attendees shared their own experiences and impressions from the conference. Here’s what a few of them had to say:
“I was diagnosed recently and learned so much new information and spoke with other virtual attendees and it meant a lot to me. Thanks so much for having a free, online option! I’m sure it’s accessible to so many more people this way! Thank you!”
“I was really impressed with this conference as a whole. I’ve been to several sleep related conferences over the last 10 years. I’m pleased to say, I left this conference more informed and connected to the community than ever before.”
“I had never met a person with IH prior to this, so I found the networking life-changing. I would love to hear a personal testimony of a person with IH from the podium, to hear more from those with the condition.”
“HF has a long and impressive history of very high-quality conferences with the program organized to engage the audience (PWH and supporters) from the get-go and offer points of hope via sessions throughout the event.”
“I liked learning about current research findings & what discoveries, treatments, and technologies are in the pipeline. I also enjoyed networking with other people with other patients & with people who treat &/or research hypersomnias.”
“It was an opportunity for me to learn more about Idiopathic Hypersomnia and gain a holistic understanding of this condition and importantly to learn more about measuring what matters to the patient. It was an excellent conference from a substance standpoint, and I look forward to attending future meetings.”
Immediately following the 2022 #BeyondSleepy Conference, the Hypersomnia Foundation, in partnership with Haymarket Medical Education, hosted a complimentary accredited continuing education dinner symposium for sleep specialists, psychiatrists, neurologists, and advanced-practice clinicians, entitled, “A New Dawn for Better Outcomes in Patients With Idiopathic Hypersomnia: New Data, New Guidance, New Treatments.” This CME/CE certified symposium took place at the AASM SLEEP 2022 Conference in Charlotte, North Carolina, and was a lively evidence-based panel discussion that included Anne Marie Morse, DO, FAASM, Lynn Marie Trotti, MD, MSc, and Christina Brundage, an HF volunteer with idiopathic hypersomnia, who provided insights into her personal experiences with the disorder.
The Hypersomnia Foundation is very grateful for the #BeyondSleepy 2022 conference sponsors and donors who made this event possible and give a huge thanks to all attendees – both in-person and virtual – for participating in discussions, breakout sessions, and workshops.