Videos

Welcome to the Hypersomnia Foundation’s video library of all things related to idiopathic hypersomnia (IH) and other rare sleep disorders. These video materials feature presentations by sleep medicine experts and scientific researchers, interviews of persons actually living with sleep disorders, and in-depth media reports about IH and other sleep disorders. These videos include presentations given by sleep medicine experts at awareness and educational conferences hosted by the Hypersomnia Foundation.

Simply choose the videos that you would like to watch by clicking on their images below. For further details about each video, 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 Conference Videos

2018 June – David Rye, MD, PhD, HF SAB Chair – “A Bird’s Eye View: Progress & Challenges in the Diagnosis & Treatment of Idiopathic Hypersomnia”
2018 June – Isabelle Arnulf, MD, HF MAB – “Women and Hypersomnia”
2016 September – Lynn Marie Trotti, MD, MSc, HF MAB Chair, of Emory University – “HF’s Patient Registry at CoRDS”

Non-HF Conference / 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 June – HF Board Member Amy Haraden Speaks About Living with IH at SLEEP2 Conference
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 2 of 3 “Tired All the Time?”
2015 April – CNN Features IH in Sleep Series – Part 3 of 3 “Improving Your Health Could Help You Sleep Better”
2012 November – Today Show Features Teenager with KLS – “Real-life ‘Sleeping Beauty’ Slept 64 Days in a Row”

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2018 June – David Rye, MD, PhD, HF SAB Chair – “A Bird’s Eye View: Progress & Challenges in the Diagnosis & Treatment of Idiopathic Hypersomnia”

What advances have we made in identifying, diagnosing, and treating idiopathic hypersomnia (IH) over the years? What challenges still exist, and how do we overcome them? How might discoveries in other fields impact research into IH, and lead to new treatments for IH?

The HF is thrilled to share Dr. David Rye’s encouraging video overview of the growing scientific interest in idiopathic hypersomnia. Dr. Rye, a clinician scientist for over 26 years and tenured Professor of Neurology at Emory University, chairs HF’s Scientific Advisory Board. He is a leading expert in IH and related sleep disorders, and received the American Academy of Neurology’s Sleep Science Award and the Sleep Research Society’s Outstanding Scientific Achievement Award for the discovery of the genetic contributions of restless legs syndrome. He has also received Narcolepsy Network’s Researcher of the Year Award, which recognized the Emory team’s more recent contribution to the understanding of the origins and treatments for hypersomnia, as well as transforming the way that sleep medicine is practiced.

2018 June – Isabelle Arnulf, MD, HF MAB – “Women and Hypersomnia”

For both men and women, having a rare sleep disorder and managing its treatment is a challenge. But for women, it can be especially complicated. As they make decisions about contraception, pregnancy, breastfeeding, and other issues unique to women, they must also take into account how the symptoms of their sleep disorder and the medications they take for it might affect these choices.

Having authored more than 150 publications in peer-reviewed scientific journals, Professor Arnulf is not only one of the world’s leading experts on all forms of hypersomnia, including narcolepsy, idiopathic hypersomnia, and Kleine-Levin syndrome, but also Professor of Neurology at the Sorbonne Universités, and head of the Sleep Disorder Service at the Pitié-Salpêtrière University Hospital in Paris, France. She trained with Dr. Michel Jouvet, who studied the function and mechanism of REM sleep soon after its discovery, and completed a postdoctoral fellowship with Dr. Emmanuel Mignot at Stanford University. Dr. Arnulf is the past-president of the French Sleep Society.

2016 September – Lynn Marie Trotti, MD, MSc, HF MAB Chair, of Emory University – “HF’s Patient Registry at CoRDS”

Dr. Trotti discusses CoRDS patient registries, the impact a patient registry can have on research, and specific details for the Hypersomnia Foundation's Patient Registry. For more information, CLICK HERE.

2019 March – Lisa Massey, Program Manager, Office of Strategic Planning, NORD – “How to Make Your Health Insurance Work for You”

Are you satisfied with your health insurance benefits? Or are you pulling your hair out over complicated policy language, undecipherable diagnostic codes, and denials of coverage for your IH treatments? This one-hour, live broadcast provided clear and practical guidance for dealing with insurance companies. Half of the broadcast consisted of information and resources with easy-to-read PowerPoint slides, while the other half contained a Q&A session.

The webinar began with a general overview of how insurance works. While insurance plans can vary from state-to-state and company-to-company, the speakers provided information and skills that were relevant, no matter what insurance plan you might have. The webinar included information on:

The speakers emphasized the importance of dealing with the insurance companies in organized and strategic ways, and provided useful tips to make that happen. The covered topics included the importance of:

The webinar speakers also provided contact information for resources, including for Medicare, HealthCare.gov, the National Association of Insurance Commissioners, and NORD’s email addresses for any questions viewers might have (education@rarediseases.org; policy@raredisease.org).

The second half of the webinar featured a Q&A session. This portion focused on a number of issues relevant to the IH community, including:

2019 January – Amanda Freeman, PhD – “Learning About GABA” – Part 1 of 2

What is GABA? And what does it have to do with hypersomnia? A new video series by neuroscientist Amanda Freeman, PhD, of Emory University describes, in layman’s terms, exactly what y-aminobutyric acid, better known as GABA, is, and how it affects sleep. Dr. Freeman explains that although there are 5 wake-promoting transmitters in your brain, there is only one neurotransmitter that promotes sleep – and that is GABA.

NOTE: If you have any questions about this GABA video series, please consult your own personal physician or info@hypersomniafoundation.org, not Dr. Freeman.

2019 February – Amanda Freeman, PhD – “Learning About GABA” – Part 2 of 2

In this second part of Dr. Freeman’s 2-part video series about GABA, she explains exactly how GABA promotes sleep – and that is by inhibiting the activity of all of the 5 wake-promoting transmitters. Dr. Freeman also describes how research by Dr. David Rye of Emory University and his colleagues have identified an endogenous molecule in the cerebrospinal fluids of patients with hypersomnia that increases the activity of GABA receptors. This research suggests that, with respect to GABA-related hypersomnia, the problems with wakefulness may be due more to excessive activity of GABA, rather than to a defect in the brain’s wake-promoting transmitters.

NOTE: If you have any questions about this GABA video series, please consult your own personal physician or info@hypersomniafoundation.org, not Dr. Freeman.

2018 September – David Rye, MD, PhD, HF SAB Chair – “Narcolepsy & Its Borderland: New Insights into the Origins of Persistent Sleepiness.”

This video is a recording of a live feed of a Department of Psychiatry grand rounds at Emory University, held on 9/26/18 and led by Dr. David Rye. To view this video, you will need to download Adobe Connect.

2017 June – HF Board Member Amy Haraden Speaks About Living with IH at SLEEP2 Conference

On June 3, 2017, HF Board Member Amy Haraden participated in a Patient Panel at the SLEEP2 (PCORI) Conference organized by Project Sleep. SLEEP2 is a project co-led by the University of Arizona, the Sleep Research Network, and Project Sleep, and is funded by the Patient-Centered Outcomes Research Institute (PCORI). SLEEP2 aims to engage patients, scientists and other stakeholders as partners across the entire span of sleep research, from topic generation to conduct of studies to disseminating and implementing research findings.

2016 April – Hiroki R. Ueda, MD, PhD – “Brain Calcium Controls How Long We Sleep”

How do our brains control when we go to sleep and when we wake up? Previous studies have tried to answer this question, but, despite years of research, our understanding of this process is incomplete. Therefore, the goal of this Japanese research study was to identify the elusive mechanisms underlying the control of 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”

How did the terms “narcolepsy,” “narcolepsy without cataplexy,” and “idiopathic hypersomnia” come about? What role did the MSLT (Multiple Sleep Latency Test) play in the development of these terms? This video is a fascinating (and funny) examination of semantics, as well as the signs and symptoms of hypersomnia.

2019 February – Georgia Public Broadcasting Features IH and David Rye, MD, PhD – “Your Fantastic Mind”

This episode in the GPB series focuses on idiopathic hypersomnia. It features Dr. David Rye of Emory University and people sharing real stories about living with IH.

2018 August – BBC News Highlights IH with a Video! – “Idiopathic Hypersomnia: When 40 Winks Turns into 48 Hours of Sleep”

Idiopathic hypersomnia on the BBC: a woman with IH explains the disorder and what it’s like living with IH in this short, straightforward video.

2015 April – CNN Features IH in Sleep Series – Part 1 of 3 “How Important Is a Good Night’s Sleep?”

In this three-part series on sleep health, Dr. Sanjay Gupta not only undergoes a Multiple Sleep Latency Test at Emory Sleep Lab, but also discusses idiopathic hypersomnia and its treatment with Dr. David Rye and Danielle Hulshizer (in Part 2). These episodes originally aired in April and May of 2015, as part as CNN’s “Vital Signs” program, hosted by Dr. Gupta.

2015 April – CNN Features IH in Sleep Series – Part 2 of 3 “Tired All the Time?”

In this three-part series on sleep health, Dr. Sanjay Gupta not only undergoes a Multiple Sleep Latency Test at Emory Sleep Lab, but also discusses idiopathic hypersomnia and its treatment with Dr. David Rye and Danielle Hulshizer (in Part 2). These episodes originally aired in April and May of 2015, as part as CNN’s “Vital Signs” program, hosted by Dr. Gupta.

2015 April – CNN Features IH in Sleep Series – Part 3 of 3 “Improving Your Health Could Help You Sleep Better”

In this three-part series on sleep health, Dr. Sanjay Gupta not only undergoes a Multiple Sleep Latency Test at Emory Sleep Lab, but also discusses idiopathic hypersomnia and its treatment with Dr. David Rye and Danielle Hulshizer (in Part 2). These episodes originally aired in April and May of 2015, as part as CNN’s “Vital Signs” program, hosted by Dr. Gupta.

2012 November – Today Show Features Teenager with KLS – “Real-life ‘Sleeping Beauty’ Slept 64 Days in a Row”

This episode of the Today Show, which originally aired on November 20, 2012, offers a glimpse into the sleep-filled life of Nicole Delien, a 17-year-old with Kleine-Levin syndrome, and provides an interview with the physician who diagnosed her disorder, Dr. Michael Rancurello of Pittsburgh.