Welcome to the Hypersomnia Foundation’s library of videos and podcasts related to idiopathic hypersomnia (IH) and other rare sleep disorders. These materials feature presentations by sleep medicine experts and scientific researchers, interviews of people actually living with sleep disorders, and in-depth media reports about IH and other sleep disorders. They include presentations given by sleep medicine experts at awareness and educational conferences hosted by the Hypersomnia Foundation.
Simply choose a topic by clicking on the images below. For further details about each, just click “Details.” In some cases, transcripts, PowerPoint slides, or other related resources may also be available.
For the videos that are available on YouTube, you can access subtitles and translations. If you would like subtitles/closed captions for a particular video presentation, click on the icon “cc,” which is located at the bottom right corner of the video screen. And if you would like these subtitles/closed captions in a language other than English, click on “Settings” (this is the “gear” icon next to the “cc” icon), then select “subtitles/closed captions,” then select “Auto-translate,” and then choose the language you would prefer.
The Hypersomnia Foundation's Event Videos
2022 June – Dr. Kelvin Tan, Chief Medical Officer for Jazz Pharmaceuticals – “An Interview With Jazz Pharmaceuticals”
June 2022 – Jennifer Gudeman, PharmD, Vice President of Medical and Clinical Affairs for Avadel Pharmaceuticals – “An Interview With Avadel Pharmaceuticals”
June 2021 – “Your Best Self: Getting Your Meds”
2021 May – Dr. Gert Jan Lammers – “Diagnosing Hypersomnia Differently: A European Proposal” – a Hypersomnia Foundation Virtual Webinar
2021 January – Anjel Burgess, Esq., HF Board Member – “Your Best Self: New Ways of Thinking About Disability”
2021 January – Your Best Self: New Ways of Thinking About Disability & Support – Hypersomnia Foundation’s Virtual Educational Event
2020 October – The Research Continues – Hypersomnia Foundation’s Virtual Hypersomnia Educational Event
2018 June – “IH and Disability: What You Need to Know” – Anjel Burgess, a disability attorney, discusses her work advising clients, including idiopathic hypersomnia patients, on their rights and obligations with respect to long-term disability.
2018 June – “Participating in a Clinical Trial” – Veronica Moore, MA, Clinical Manager IQVIA Patient Advocacy/Insights Lead
2018 June – Kiran Maski, MD, MPH, HF MAB Member – “Diagnostic Challenges of Pediatric Hypersomnia Disorders”
2018 June – Thanh Dang-Vu, MD, PhD, HF MAB Member – “Structural and Functional Brain Alterations in Idiopathic Hypersomnia”
2018 June – Lynn Marie Trotti, MD, MSc, HF MAB Chair – “Conventional (and Not-So-Conventional) Treatments for Idiopathic Hypersomnia”
2018 June – David Rye, MD, PhD, HF SAB Chair – “A Bird’s Eye View: Progress & Challenges in the Diagnosis & Treatment of Idiopathic Hypersomnia”
Personal Journey Stories
2020 October – Christina Brundage, HF Volunteer and IH Patient Advocate – “Christina’s Story: Volunteering for IH Clinical Trials”
2020 October – Michelle Emrich, MD – “A Doctor’s Once Agile Brain Broken by IH” – Video courtesy of Michelle Emrich
2020 October – Meghan Mallare – “Sleeping My Life Away” – Video courtesy of Meghan Mallare
Non-HF Event / Research / Education Videos
2019 March – Lisa Massey, Program Manager, Office of Strategic Planning, NORD – “How to Make Your Health Insurance Work for You”
2019 January – Amanda Freeman, PhD – “Learning About GABA” – Part 1 of 2
2019 February – Amanda Freeman, PhD – “Learning About GABA” – Part 2 of 2
2018 September – David Rye, MD, PhD, HF SAB Chair – “Narcolepsy & Its Borderland: New Insights Into the Origins of Persistent Sleepiness.”
2017 January – Global Genes RARE Webinar – “Make Sense of Your Dollars”
2016 April – Hiroki R. Ueda, MD, PhD – “Brain Calcium Controls How Long We Sleep”
2013 – David Rye, MD, PhD, HF SAB Chair, Presents at Narcolepsy Network Conference – “What’s in a Name? Understanding the Origins of the Terminologies for the Family of Hypersomnias”
Press Videos
2019 February – Georgia Public Broadcasting Features IH and David Rye, MD, PhD – “Your Fantastic Mind”
2018 August – BBC News Highlights IH With a Video! – “Idiopathic Hypersomnia: When 40 Winks Turns Into 48 Hours of Sleep”
2015 April – CNN Features IH in Sleep Series – Part 1 of 3 “How Important Is a Good Night’s Sleep?”
2015 April – CNN Features IH in Sleep Series – Part 3 of 3 “Improving Your Health Could Help You Sleep Better”
Podcasts
2019 April – Wake Up Narcolepsy Features Betsy Ashcraft, HF Board Member – “Narcolepsy 360” – IH Series Part 2 of 2
2019 April – Wake Up Narcolepsy Features David Rye, MD, PhD, HF SAB Chair – “Narcolepsy 360” – IH Series Part 1 of 2
2018 December – Wake Up Narcolepsy Features Kiran Maski, MD, MPH (HF and WUN MAB Member) – “Narcolepsy 360”
2016 July – Sleep Hub – “SLEEP Meeting 2016 Update”