In Case You Missed It! – October 2022

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If you’ve missed any of the latest news we’ve shared through our social media this month, don’t worry! Get up to date with this edition of “In Case You Missed It!”

  • Save the date for the HF 2023 #BeyondSleepy conference in Indianapolis!
  • Stay connected with others—follow the Hypersomnia Alliance
  • Meet Dr. David Plante and Dr. Thanh Dang-Vu, chairs of HF’s medical and scientific advisory boards
  • HF’s board chair, David Burley, selected to speak at the SASM Annual Meeting
  • HF’s CEO, Claire Wylds-Wright, joins others to share thoughts, advice, and insight on Project Sleep’s podcast series
  • Get EveryLife Foundation’s free resource guide for young adults with rare diseases
  • Dr. Emmanuel Mignot and Dr. Masashi Yanagisawa are awarded the “2023 Breakthrough Prize in Life Sciences”
  • Register or update your information in HF’s Coordination of Rare Diseases at Sanford (CoRDS) Registry
  • Register for the 2022 RARE Health Equity Summit in Atlanta, Georgia

Don’t worry if you’ve missed anything. We’ve got you covered!

Save the date for the HF 2023 #BeyondSleepy conference in Indianapolis!

Plan on joining us in Indianapolis, Indiana from June 2 to 4, 2023 for the Hypersomnia Foundation’s 2023 #BeyondSleepy conference for people with idiopathic hypersomnia, narcolepsy, and Kleine-Levin syndrome and their supporters.

For updates and details: Follow us on social media—Facebook, LinkedIn, Twitter, Instagram; check the “Events” section on our website; and subscribe to our e-newsletter SomnusNooze.

Mark your calendars, and we’ll see you in Indianapolis in 2023!

Stay connected with others—follow the Hypersomnia Alliance

It is especially important we stay connected to each other. Sleep disorders can make us feel isolated, but it’s important to remember that you are not alone. We strongly encourage you to follow the Hypersomnia Alliance. This amazing group’s primary goal is spreading hypersomnia awareness; they are dedicated to encouraging support for those living with a neurological hypersomnolence disorder. Share your concerns, thoughts, and inspirations with others. Let’s take care of ourselves and stay connected. Remember, it’s okay to ask for help and support.

For more information about the Hypersomnia Alliance, visit their Facebook page.

Meet Dr. David Plante, chair of HF’s Medical Advisory Board, and Dr. Thanh Dang-Vu, chair of HF’s Scientific Advisory Board

David Plante, MD, PhD—chair of the Hypersomnia Foundation’s Medical Advisory Board

Dr. Plante is an Associate Professor of Psychiatry at the University of Wisconsin-Madison and Medical Director of the Wisconsin Institute for Sleep and Consciousness. His current research focuses on the pathophysiology and evaluation of disorders of central hypersomnolence, with specific emphasis on hypersomnolence comorbid with affective illness.

Dr. Plante manages the Plante Lab, which broadly focuses on applied research at the intersections of sleep medicine and psychiatry, with a specific emphasis on disorders of excessive daytime sleepiness and/or sleep duration (i.e. hypersomnias). They emphasize collaborative and translational approaches in their research, which include applying emerging technologies in the assessment and treatment of sleep and psychiatric disorders, in both clinical and research settings. Learn more about The Plante Lab and Dr. Plante’s ongoing research on the Plante Lab’s website.

For more information about Dr. Plante and the other members of our Medical Advisory Board, visit our “Medical Advisory Board” web page.

Thanh Dang-Vu, MD, PhD – Chair of the Hypersomnia Foundation’s Scientific Advisory Board

Dr. Dang-Vu is a neurologist with expertise in sleep medicine. He is a Professor in the Department of Health, Kinesiology and Applied Physiology at Concordia University and researcher at the PERFORM Center and the Center for Studies in Behavioral Neurobiology. He is also a researcher and the Associate Director for Clinical Research at the Centre de Recherche de l’Institut Universitaire de Gériatrie de Montréal, affiliated with Université de Montréal, and the Vice-President (Research) of the Canadian Sleep Society.

His expertise includes human sleep physiology, sleep disorders and the use of neuroimaging in sleep research. When asked about his research interests, Dr. Dang-Vu states, “A line of research in my laboratory investigates the pathophysiology of sleep disorders, such as insomnia, hypersomnias and parasomnias, using multimodal neuroimaging and EEG. Beyond the identification of the neural mechanisms responsible for sleep disruption and daytime somnolence, these studies aim at further understanding the clinical evolution and cognitive impact of these disorders, in order to inform treatment options.”

Watch a quick interview with Dr. Dang-Vu HERE.

And watch his Hypersomnia Foundation conference video presentation of “Structural and Functional Brain Alterations in Idiopathic Hypersomnia” on the “Videos and Podcasts” section of our website.

For more information about Dr. Dang-Vu and the other members of our Scientific Advisory Boards, visit our “Scientific Advisory Board” web page.

David Burley, HF’s board chair, speaks at the SASM Annual Meeting

David Burley, chair of the Hypersomnia Foundation’s Board of Directors, was a speaker at the 12th Annual Meeting of the Society of Anesthesia and Sleep Medicine (SASM) held on October 21. The theme of this year’s event was “Sleep Health Research and Innovation: A Patient-Centered Direction.”

SASM brought together an excellent team of healthcare professionals and sleep experts to speak on the latest discoveries in sleep health research and innovations to improve the patient experience.

Congratulations, David, for being selected as a speaker at SASM’s annual meeting, and thank you for your willingness to share your experience and expertise!

Listen to HF’s CEO, Claire Crisp, and others share thoughts, advice, and insight on Project Sleep’s podcast series

Claire Crisp, the Hypersomnia Foundation’s CEO and author of “Waking Mathilda,” was interviewed with fellow authors Julie Flygare and Henry Nicholls, on Project Sleep’s podcast—“Episode 13 – Narrating Narcolepsy.”

“We need as many narratives that feed into the journey between onset and diagnosis as possible,” says Claire Crisp. “Layering up on those different perspectives and putting it in print gives power and voice to those that remain undiagnosed.”

You can also get important information and helpful tips on healthcare coverage and insurance resources by listening to Project Sleep’s podcast “Episode 12 – Health Insurance 101” with Megan Donnell, a healthcare and insurance benefits professional, a passionate advocate for those living with rare disorders, and mother to a child living with idiopathic hypersomnia. Check out Project Sleep’s podcast series HERE. (Also see HF’s “Health Insurance” web page.)

Download the EveryLife Foundation’s resource guide for young adults with rare diseases, and learn about their Young Adult Rare Representatives program

It can be overwhelming to navigate healthcare as a young adult with a rare disease, but it also brings new opportunities to learn and become your own best advocate. If you are a young adult with a rare disease and feel overwhelmed by the U.S. healthcare system, check out the EveryLife Foundation for Rare Diseases’ new resource guide, “Healthcare Decision Making for Young Adults With Rare Diseases.”

Compiled by the EveryLife Foundation’s volunteer Young Adult Rare Representatives (YARR), this guide is full of resources to help young adults find supportive, responsive, and inclusive healthcare.

Check out the FREE Guide HERE.

More Info: EveryLife Foundation’s volunteer YARR are highly motivated rare disease community members between 16 and 30 years old. The main purpose of YARR is to instill confidence in the next generation of rare disease advocates.

The Hypersomnia Foundation is proud of Christina Brundage, the coordinator of our Patient Advisory and Advocacy Council (PAAC) and Class of 2021 Graduate of the YARR Leadership Academy.

Learn more about Christina and the EveryLife Foundation YARR program HERE.

Dr. Emmanuel Mignot and Dr. Masashi Yanagisawa are awarded the “2023 Breakthrough Prize in Life Sciences”

Congratulations to Dr. Emmanuel Mignot and Dr. Masashi Yanagisawa, recipients of the “2023 Breakthrough Prize in Life Sciences” for discovering that narcolepsy is caused by the loss of a small population of brain cells that make a wake-promoting substance, paving the way for the development of new treatments for sleep disorders.

Dr. Mignot and Dr. Yanagisawa uncovered the molecular mechanisms of narcolepsy, which have led to treatments shown to relieve the symptoms of narcolepsy, as well as enabling the design of sleep-inducing drugs. Their research revealed that narcolepsy is a neurodegenerative disease with autoimmune origins, and raised the possibility that other neurodegenerative diseases may be caused by selective loss of neurons. Their studies have shed light on a central mechanism of sleep and waking, an area of behavior that still holds many mysteries.

Read more in the online edition of Sleep Review magazine.

And learn more about the Breakthrough Prize Foundation and the other 2023 award recipients HERE.

Register or update your information in HF’s Coordination of Rare Diseases at Sanford (CoRDS) Registry

The Hypersomnia Foundation Registry at CoRDS (Coordination of Rare Diseases at Sanford) has over 3,571 participants and we continue to grow by 35+ participants per month!

If you have been diagnosed with idiopathic hypersomnia, Kleine-Levin syndrome, narcolepsy, or hypersomnia associated with certain other conditions, you can make an important contribution to hypersomnia research by joining the Hypersomnia Foundation’s Registry at CoRDS.

Sharing information about your symptoms, your previous treatments, and your diagnostic journey holds the key to solving this complicated puzzle of rare sleep disorders by providing a valuable dataset for researchers to study.

Go to our Registry web page for more information and a step-by-step guide on how to enroll. If you are already a registry participant, be sure to update your information annually.

Be sure to check out the most recent CoRDS Summary Report HERE.

REGISTER or UPDATE your information today!

Register for the 2022 RARE Health Equity Summit in Atlanta, Georgia

Registration is open for the “2022 RARE Health Equity Summit – Partners in Action” being held in person and virtually from November 9 to 11, 2022 in Atlanta, Georgia.

Presented in partnership with the Rare Disease Diversity Coalition (RDDC), the RARE Health Equity Summit brings together stakeholders in the rare disease community to identify the challenges that disproportionately affect underrepresented populations and define collaborative efforts to address those inequities.

Sessions will focus on:

  • reducing racial disparities in care
  • building more inclusive research programs
  • addressing bias and barriers to genetic testing
  • learning cultural humility to create an inclusive and equitable environment for all members of the rare disease community

This event will provide attendees with strategic insights and tools to empower and equip them to address racial, ethnic, gender, socioeconomic, and other disparities. The outcomes of the RARE Health Equity Summit will help attendees advocate for more inclusion in the rare disease community and will provide relevant resources and information to support underrepresented and/or minoritized patients.

Admission fee for the virtual attendance is $50. Prices vary for in-person attendance. Visit the Global Genes website for registration and additional pricing information.

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