Hypersomnia Foundation

VIRTUAL MEET & GREET – "Self Advocacy: Getting Your Best Care"
2021-06-17 19:00 - 20:30 (America/New_York) | NC
Join us on Thursday, June 17 at 7:00 p.m. (Eastern) for our VIRTUAL MEET & GREET – “Self-Advocacy: Getting Your Best Care.” Turn your cameras on as we talk about the challenges of advocating for timely and quality care for idiopathic hypersomnia, narcolepsy and Kleine-Levin syndrome.
Following a short panel presentation, we’ll break into chat rooms to talk about this issue together. Co-hosted by Hypersomnia Alliance Co-Founder Diana Kimmel and HF Board Members Sarah Beazley and Veronica Moore. Space is limited, so sign up soon!

VIRTUAL – Your Best Self: Getting Your Meds!
2021-06-24 12:00 - 13:30 | NC
Join us Thursday, June 24, 2021 at 12:00-1:30 p.m. (Eastern) for our FREE virtual event “Your Best Self: Getting Your Meds!”- Reducing out of pocket cost for prescription medications and appealing insurance denials.
In an ideal world, your doctor gives you a prescription for a medication, the pharmacy fills it promptly, and insurance covers all or most of the cost. Unfortunately, many people with IH or related sleep disorders regularly experience breakdowns in this process. What if the out-of-pocket costs are very high? What if the insurer denies coverage altogether? What if you don’t have insurance in the first place? For this webinar, we’ve invited two speakers who are experts in the field of drug access and affordability and insurance appeals to tell us about the programs and strategies that we can use when issues arise.
Speakers include:
CARLA DELLAPORTA — Carla is the Director of User Engagement at Needymeds, which is a non-profit organization that connects people to programs that will help them afford their medications and other healthcare costs. She will tell us about the many resources and links to programs that can be found on the Needymeds website. Needymeds has partnered with the Hypersomnia Foundation to develop an information page dedicated to idiopathic hypersomnia and with Wake Up Narcolepsy for a page on narcolepsy.
LAURIE TODD — Since winning her own insurance battle for lifesaving surgery in 2005, Laurie has gone on to write and fight 232 appeals for others – all different conditions, all different insurers, all over the country. Countless others have won their appeals using her latest book “APPROVED: Win Your Appeal in 5 Days.” Laurie will share her unique approach to making insurance companies pay their fair share.
Both of the presentations, including questions and answers from the audience, will be recorded and posted on the recently launched HF insurance web pages.

VIRTUAL: NIH NINDS Health Disparities and Inequities in Neurological Disorders Workshop
2021-09-22 - 2021-09-24 | NC
Registration is now open for the upcoming NIH NINDS HEADWAY Health Disparities and Inequities in Neurological Disorders Workshop. The event will be held virtually from September 22nd through 24th from 12-5 pm ET daily. A detailed agenda is available on the event website. This workshop is open to all, including patients, caregivers, advocates, researchers, healthcare providers, industry, etc.
NIH NINDS (The U.S. National Institutes of Health’s National Institute on Neurological Disorders and Stroke) “is committed to reducing the disproportionate burden of neurological disease borne by underserved groups of society, including race/ethnic, sex/gender minorities, rural, disabled and socioeconomically disadvantaged populations, by funding a spectrum of research from basic through implementation science, and training the next generation of health disparities investigators.
In 2020, the NINDS Office of Global Health and Health Disparities within the Division of Clinical Research, in collaboration with the Office of Science Policy and Planning, embarked on a strategic planning process to address health disparities and inequities in neurological disorders through research. As a culmination of the strategic planning process, NINDS is hosting a Health Disparities and Inequities in Neurological Disorders Workshop (HEADWAY).
The goal of the HEADWAY workshop is to identify evidence-based interventions that are feasible and widely scalable, to diminish disparities and inequities in neurological disorders. This workshop will assemble subject matter experts in various disciplines from clinical and health services researchers, to implementation and behavioral scientists, along with community stakeholders and patient advocates. Findings and recommendations from the workshop and strategic planning process will be placed on the NINDS website and used as resources for setting priorities and developing initiatives over the next 5 – 10 years.
Please email oghhd-headway@ninds.nih.gov with any related questions or comments.”

VIRTUAL: Society of Anesthesia and Sleep Medicine (SASM) 2021 Annual Meeting
2021-10-07 - 2021-10-08 | NC
The Society of Anesthesia and Sleep Medicine (SASM) 2021 Virtual Annual Meeting
“Sleep Health: The New Vital Sign”
Registration is now open for the SASM Annual Meeting on October 7-8, 2021. This free virtual conference is open to patients as well as healthcare providers. Presentations and discussions tentatively scheduled are:

Sleep Health and Why We Should Be Focusing on It in This Decade

Sleep and the Pandemic

Sleep Health: Health Care Workers

Postoperative Complications in Obstructive Sleep Apnea

Collaborative Guidelines on Postoperative Management of Patients with OSA

Healthcare providers can get CME for free, if they’re SASM members (small fee if they’re not members). Sessions will be recorded and available after the conference for all registrants. Register and view the full agenda at the SASM website.

VIRTUAL: Canadian Sleep Society (CSS) Conference 2021
2021-10-28 - 2021-10-30 | NC
For registration in French, click HERE.
The Canadian Sleep Society (CSS) is hosting a virtual conference. In addition to the main scientific program, it will also feature patient engagement sessions for the public, which will be fully accessible online for free. See the full details HERE.
Of particular interest to people with narcolepsy or idiopathic hypersomnia is the Narcolepsy/Hypersomnia Engagement Session on Friday, Oct. 29th:

English—2 PM to 2:55 PM ET with Dr. Jason Valerio
French—3 PM to 3:55 PM ET with Dr. Alex Desautels

Each session will feature a formal presentation regarding diagnosis, medication, disease course, tips and more followed by a 25 minutes Q&A session during which patients with narcolepsy and/or IH will be able to ask questions.

VIRTUAL - Reaching Every Patient: A Health Equity Conversation
2021-11-13 12:00 - 14:00 | NC
Reaching Every Patient: A Health Equity Conversation – An HF VIRTUAL Event
Saturday, November 13th 12noon-2pm (EST)
Let’s talk about how we can help everyone with a rare sleep disorder get a proper diagnosis and treatment! Many people with rare sleep disorders face diagnosis and treatment delays. Some don’t seem to get a diagnosis at all: we’ve noticed that many communities are vastly underrepresented in patient registries and clinical trials – why is this? What other barriers are there?
When everyone is diagnosed, our community not only grows, but becomes stronger in our advocacy to get more research and improved treatments!
So please join us to listen, learn and engage in this event. We’ll discuss a few areas of common interest for people with sleep disorders, share patient stories, resources, and talk about how we can all play a role in building a wider community.
Note: This event is open to attendees from any country.
More on this event:
HF’s Diversity and Health Equity Taskforce is inviting the IH, narcolepsy and KLS patient communities to join this important conversation.
We are aware that there are ongoing challenges when it comes to the inclusion of underrepresented, seldom heard or socially excluded groups. In order to ensure equity in healthcare, it is critical to elevate the perspectives of patients in underrepresented groups and learn from their experiences.
Prior knowledge of or experience in this area is not a requirement to participate, and allies are welcome! We hope to bring in many different perspectives from stakeholders focused on health equity, diversity, inclusion and allyship, and other relevant areas. We invite everyone to listen, learn, and participate in this engaging event. We hope you are available to participate and share your interest in this important topic!

VIRTUAL MEET & GREET - "We're in This Together!"
2022-01-15 13:00 - 14:30 | NC
Join us on Saturday, January 15, 2022 at 1:00-2:30 p.m. (Eastern) for our VIRTUAL MEET & GREET – “We’re in This Together!”
Is it a challenge for you (and your supporters) to manage life with a sleep disorder? You’re not alone! We invite people with IH, KLS, and narcolepsy AND their supporters to join in the discussion as we share experiences, paths to understanding these sleep disorders, and practical ideas for coping.
This 90-minute event will be led by community advocates:

Diana Kimmel from Hypersomnia Alliance
Christen Wernig from the Colorado Narcolepsy & IH Support Group
Diane Powell from the Hypersomnia Foundation
Michael Sparace from the Hypersomnia Foundation

and will feature a special guest, Dr. John Harsh, a psychologist certified in sleep medicine.
Space is limited, so sign-up soon!

ROME: World Sleep 2022 (a conference for sleep medicine professionals)
2022-03-11 - 2022-03-16 | NC
The following event is primarily for sleep medicine professionals. HF will attend as part of our mission to raise awareness and advocate for more research and better treatments.
Check out the keynote speakers HERE.

CHARLOTTE, NC - HF Conference
2022-06-03 - 2022-06-05 | Sheraton Le Meridien Charlotte Hotel Complex, 555 South McDowell Street, South Tower, Charlotte, NC, 28204, United States
Join us in Charlotte, North Carolina on June 3 – 5, 2022!
Join us in beautiful Charlotte for the Hypersomnia Foundation’s #BeyondSleepy Conference 2022 for people with idiopathic hypersomnia, narcolepsy, and Kleine-Levin Syndrome and their supporters. After such a long hiatus from meeting in person, we are planning a great mix of speakers covering the latest in research, treatments, and clinical trials; networking, discussion sessions, a pool-side evening reception, and more.
ALL MEALS AND BREAKS ARE INCLUDED IN THE LOW “EARLY BIRD” REGISTRATION PRICE OF $99.00. There is a limited block of rooms at the Sheraton Charlotte Hotel at the rate of $139/night for the duration of our conference. Reserve your room today!
The conference begins Friday, June 3rd at 5:00 p.m. EDT and ends at noon EDT on Sunday, June 5th. For those unable to attend, the general session presentations will be live-streamed online and through the downloadable Whova mobile app.

CHARLOTTE: APSS SLEEP 2022 (a conference for sleep medicine professionals)
2022-06-04 - 2022-06-08 | NC
The following event is primarily for sleep medicine professionals. HF will attend as part of our mission to raise awareness and advocate for more research and better treatments.
From the website https://www.sleepmeeting.org/about/:
SLEEP is the annual meeting of the Associated Professional Sleep Societies, LLC (APSS), which is a joint venture of the American Academy of Sleep Medicine (AASM) and the Sleep Research Society (SRS).
The SLEEP meeting provides evidence-based education to advance the science and clinical practice of sleep medicine, disseminates cutting-edge sleep and circadian research, promotes the translation of basic science into clinical practice, and fosters the future of the field by providing career development opportunities at all levels. There is simply no other gathering of sleep professionals anywhere of this scale. The conference is attended by thousands of individuals from all around the world, all connected by their interest and/or expertise in sleep medicine. Many of these attendees are pioneering leaders in the field. If you are looking to network, you must attend SLEEP.

CHARLOTTE, NC: Accredited Continuing Education Dinner Symposium
2022-06-05 18:30 - 20:30 | The Westin Charlotte, 601 South College Street, Charlotte, NC, 28202, United States
NOTE: The intended audience for this CME/CE certified symposium is sleep specialists, psychiatrists, neurologists, and advanced-practice clinicians.
The Hypersomnia Foundation is partnering with Haymarket Medical Education on a complimentary accredited continuing education dinner symposium, “A New Dawn for Better Outcomes in Patients With Idiopathic Hypersomnia: New Data, New Guidance, New Treatments” being held on Sunday, June 5, 2022.
The symposium is being presented at the SLEEP 2022 conference in Charlotte, NC, so it’s a great opportunity to participate in this CME event while also attending the HF Conference and/or SLEEP 2022 conferences.
REGISTER HERE for this FREE event.
SYMPOSIUM DETAILS:
WHEN – Sunday, June 5, 2022 / 6:30-7:00 p.m. Registration and Dinner / 7:00-8:30 p.m. Scientific Session
WHERE – The Westin Charlotte, Providence Ballroom, Charlotte, NC
PROGRAM DESCRIPTION – This CME/CE-certified industry-supported event presented at SLEEP 2022, chaired by Russell Rosenberg, PhD, FAASM, and in association with the Hypersomnia Foundation, consists of a lively evidence-based panel discussion among faculty experts (Anne Marie Morse, DO, FAASM, and Lynn Marie Trotti, MD, MSc) and a person with idiopathic hypersomnia, who will provide insights into their personal experiences with this disorder.
INTENDED AUDIENCE – Sleep specialists, psychiatrists, neurologists, and advanced-practice clinicians.

Virtual: UNIGHT - Discuss. Share. Connect.
2023-01-30 19:00 - 20:30 | NC
UNIGHT – Discuss. Share. Connect.
Monday, January 30th at 7:00 p.m. (Eastern)
Join us on the last Monday of every month via Zoom at 7:00 PM (Eastern) / 4:00 PM (Pacific) for UNIGHT – a monthly virtual get together for people with sleep disorders, their family and friends to have an open, casual discussion about various topics related to living with a sleep disorder. UNIGHT is an opportunity to discuss, share, connect, and just be ourselves.
The first UNIGHT is Monday, January 30 with special guest Dr. Anne Marie Morse.

VIRTUAL: UNIGHT - Discuss. Share. Connect.
2023-02-20 19:00 - 20:30 | NC
UNIGHT – Discuss. Share. Connect.
Monday, February 20th at 7:00 p.m. (Eastern)
Join us every month via Zoom at 7:00 PM (Eastern) / 4:00 PM (Pacific) for UNIGHT – a monthly virtual get together for people with sleep disorders, their family and friends to have an open, casual discussion about various topics related to living with a sleep disorder. UNIGHT is an opportunity to discuss, share, connect, and just be ourselves.
This month’s UNIGHT is Monday, February 20th with special guest Dr. Lynn Marie Trotti.

VIRTUAL and IN-PERSON - Salt Lake City, UT - #BeyondSleepySatellite HF Conference
2023-03-04 08:00 - 17:00 | NC
The Hypersomnia Foundation is hosting a series of one-day hybrid conferences (in-person and virtual) throughout the United States in 2023. Our first #BeyondSleepySatellite hybrid event is March 4th from 10:00 a.m.-4:00 p.m. (MST) in Salt Lake City at the Sheraton Salt Lake City Hotel.
Registration for #BeyondSleepySatellite – Together in Salt Lake City is $25 for in-person attendees and FREE for virtual attendees.
AGENDA and SPEAKER BIOS
10:00-10:30 AM – Welcome, Introductions, and Icebreaker with Claire Wylds-Wright, HF CEO
10:30-11:15 AM – “Hypersomnia: Assessment and Management,” presented by Dr. Chris Hammond
Dr. Hammond is from the Ogden Clinic in Utah. He is dual board-certified in Neurology and Sleep Medicine whose professional interests include sleep disorders, such as sleep apnea and narcolepsy, multiple sclerosis, peripheral nerve diseases, and epilepsy. Dr. Hammond and his Sleep Lab are certified by the Accreditation Commission for Healthcare.
11:15 AM – 12:00 PM – “Idiopathic Hypersomnia and Social Security Disability: What You Need to Know,” presented by Anjel Burgess, JD
Anjel Burjess, JD is an attorney specializing in Social Security Disability Law for adults and children, Veterans Disability, and Guardianships. She is a member of the Hypersomnia Foundation Board of Directors and has been a featured speaker for several HF events, other organizations, support groups, and the local bar association.
12:00-1:00 PM – LUNCH
1:00-1:45 PM – “Game of Life,” presented by Rebecca King
Rebecca King has been diagnosed with idiopathic hypersomnia/narcolepsy type 2. She is a member of the Hypersomnia Foundation Board of Directors and currently serves as the Board Secretary. Her main focus is advocating for hypersomnia research, access and affordability of medical care and prescription medications, and increasing the understanding of hypersomnias.
1:45-2:30 PM – “Living with Idiopathic Hypersomnia,” presented by Amy Desmarais
Amy Desmarais is a long-time supporter of and volunteer for the Hypersomnia Foundation and currently serves as the organization’s Treasurer/Chief Financial Officer. She will talk about her experience of living with IH and successfully managing her professional, personal, and family life.
2:30-2:45 PM – BREAK
2:45-3:30 PM – Panel Discussion
3:30-4:00 PM – Recap and Closing Remarks, Claire Wylds-Wright, HF CEO
For those travelling to Salt Lake City, we have reserved a block of rooms at the Sheraton. Reserve your room today!

VIRTUAL: UNIGHT - Discuss. Share. Connect.
2023-03-27 19:00 - 20:30 | NC
UNIGHT – Discuss. Share. Connect.
Monday, March 27th at 7:00 p.m. (Eastern)
Join us every month via Zoom at 7:00 PM (Eastern) / 4:00 PM (Pacific) for UNIGHT – a monthly virtual get together for people with sleep disorders, their family and friends to have an open, casual discussion about various topics related to living with a sleep disorder. UNIGHT is an opportunity to discuss, share, connect, and just be ourselves.
This month’s UNIGHT is Monday, March 27th with special guest guest Dr. Michael Grandner, who will be discussing “Disparities in Sleep Medicine.”
Dr. Grandner is the Director of the Sleep and Health Research Program at the University of Arizona and the Director of the Behavioral Sleep Medicine Clinic at the Banner-University Medical Center. His research focuses on how sleep and sleep-related behaviors are related to cardiovascular disease, diabetes, obesity, neurocognitive functioning, mental health, and longevity.

VIRTUAL: UNIGHT - Discuss. Share. Connect.
2023-04-24 19:00 - 20:30 | NC
UNIGHT – Discuss. Share. Connect.
Monday, April 24 at 7:00 p.m. (Eastern)
Join us every month via Zoom at 7:00 PM (Eastern) / 4:00 PM (Pacific) for UNIGHT – a monthly virtual get together for people with sleep disorders, their family and friends to have an open, casual discussion about various topics related to living with a sleep disorder. UNIGHT is an opportunity to discuss, share, connect, and just be ourselves.
The month’s UNIGHT is Monday, April 24 with special guest Dr. Jennifer Mundt, who will be discussing “Behavioral Therapies for Hypersomnia.”
Dr. Jennifer Mundt is a sleep psychologist at the Northwestern Center for Circadian and Sleep Medicine. She is an assistant professor of neurology and is board certified in behavioral sleep medicine. She is the director of the Behavioral Sleep Medicine Lab and the Behavioral Sleep Medicine Training Program at Northwestern University. Dr. Mundt serves on the board of directors for the Illinois Sleep Society.

VIRTUAL: UNIGHT - Discuss. Share. Connect.
2023-05-22 19:00 - 20:30 | NC
UNIGHT – Discuss. Share. Connect.
Monday, May 22 at 7:00 p.m. (Eastern)
Join us every month via Zoom at 7:00 PM (Eastern) / 4:00 PM (Pacific) for UNIGHT – a monthly virtual get together for people with sleep disorders, their family and friends to have an open, casual discussion about various topics related to living with a sleep disorder. UNIGHT is an opportunity to discuss, share, connect, and just be ourselves.
The month’s UNIGHT is Monday, May 22nd at 7:00 PM (Eastern) / 4:00 PM (Pacific) with special guest Nicole Zamary for a casual open discussion on “Workplace Accommodations for Hypersomnolence Disorders.”
Nicole Zamary is a hard-working, supportive Human Resources professional at the University of West Florida. She is passionate about helping others understand the complex nature of the HR world and an advocate for those needing assistance. After more than 15 years of struggling with unexplained exhaustion and sleepiness, she was diagnosed with type 2 narcolepsy without cataplexy at the age of 44. She is a compassionate individual, enthusiast of all things crafty, family-oriented, and a devoted grandmother.

Indianapolis, IN - HF Conference
2023-06-02 - 2023-06-04 | The Alexander, 333 S Delaware Street, Indianapolis, IN, 46204, United States
Join 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.
Registration for in-person attendance is $99. Thanks to generous support from our sponsors, virtual registration is free.
Presentations will cover the latest in research, treatments, and clinical trials. Also planned are networking and discussion sessions, a pool-side evening reception, and many opportunities for everyone to catch up with old friends and meet new ones. Download the schedule for this three-day event HERE.
Whether you attend in-person or virtually, you will also get access to recordings of all the general sessions for three months after the conference via Whova, so you can still “attend” even if the June 2-4 dates/times don’t work for you! Please note that all breakout sessions are only available live in person. They will not be recorded or streamed.
The conference is being held at The Alexander hotel on South Delaware Street in Indianapolis.
We look forward to seeing you in-person and/or virtually in Indianapolis from June 2-4!

Indianapolis: APSS SLEEP 2023 (a conference for sleep medicine professionals)
2023-06-03 - 2023-06-07 | NC

VIRTUAL: UNIGHT - Discuss. Share. Connect.
2023-06-26 19:00 - 21:00 | NC
UNIGHT – Discuss. Share. Connect.
Monday, June 26 at 7:00 p.m. (Eastern)
Join us every month via Zoom at 7:00 PM (Eastern) / 4:00 PM (Pacific) for UNIGHT – a monthly virtual get together for people with sleep disorders, their family and friends to have an open, casual discussion about various topics related to living with a sleep disorder. UNIGHT is an opportunity to discuss, share, connect, and just be ourselves.
The month’s UNIGHT is Monday, June 26th at 7:00 PM (Eastern) / 4:00 PM (Pacific) with special guest host Dr. Yishan Xu, as she leads a discussion on “Navigating Relationships with Hypersomnolence Disorders” with panelists Matthew Horsnell, Diana Kimmel, and Michael Sparace.
Dr. Yishan Xu is a licensed clinical psychologist and board-certified sleep specialist who trained at the Stanford Sleep Center and also earned the Diplomate in Behavioral Sleep Medicine certification by The Board of Behavioral Sleep Medicine. As host of the “Deep Into Sleep” podcast, Dr. Yishan shares knowledge and tips around sleep, health, business, lifestyle, and relationships, inspiring people to discover more about themselves and to achieve a healthier mindset.
Registration is FREE!
Zoom link will be sent via email after registration.
Please note: Our UNIGHT virtual forum is educational and supportive in nature and will offer self-care strategies to help you in your daily life. However, the group will not engage in rendering any psychological or healthcare advice for any particular individual or situation, and will not provide medical, mental health, or any other type of health-related service. No diagnosis, treatment recommendations, medication advice, or any other type of medical or mental health recommendations will be offered. Our support group is not a substitute for, or alternative to, treatment by a licensed medical professional. Always seek the advice of your own physician or another qualified health provider with any questions you may have regarding your medical condition. The Hypersomnia Foundation does not recommend or endorse any specific tests, physicians, lawyers, legal advisers, products, medications, procedures, opinions, or other information that may be referenced on its website or during any online support groups. UNIGHT is not a focus group and is not part of a research study and there is no compensation for attending.

VIRTUAL: UNIGHT - Discuss. Share. Connect.
2023-07-31 19:00 - 21:00 | NC
UNIGHT – Discuss. Share. Connect.
Monday, July 31 at 7:00 p.m. (Eastern)
Join us every month via Zoom at 7:00 PM (Eastern) / 4:00 PM (Pacific) for UNIGHT – a monthly virtual get together for people with sleep disorders, their family and friends to have an open, casual discussion about various topics related to living with a sleep disorder. UNIGHT is an opportunity to discuss, share, connect, and just be ourselves.
The month’s UNIGHT is Monday, July 31st at 7:00 PM (Eastern) / 4:00 PM (Pacific) for a discussion about “Pregnancy and Parenting” with panelists Diana Anderson, David Burley, Amy Desmarais, and Matthew Horsnell.
Registration is FREE!
Zoom link will be sent via email after registration.
Please note: Our UNIGHT virtual forum is educational and supportive in nature and will offer self-care strategies to help you in your daily life. However, the group will not engage in rendering any psychological or healthcare advice for any particular individual or situation, and will not provide medical, mental health, or any other type of health-related service. No diagnosis, treatment recommendations, medication advice, or any other type of medical or mental health recommendations will be offered. Our support group is not a substitute for, or alternative to, treatment by a licensed medical professional. Always seek the advice of your own physician or another qualified health provider with any questions you may have regarding your medical condition. The Hypersomnia Foundation does not recommend or endorse any specific tests, physicians, lawyers, legal advisers, products, medications, procedures, opinions, or other information that may be referenced on its website or during any online support groups. UNIGHT is not a focus group and is not part of a research study and there is no compensation for attending.

VIRTUAL: UNIGHT - Discuss. Share. Connect.
2023-08-28 19:00 - 20:30 | NC
UNIGHT – Discuss. Share. Connect.
Monday, August 28 at 7:00 p.m. (Eastern)
Join us every month via Zoom at 7:00 PM (Eastern) / 4:00 PM (Pacific) for UNIGHT – a monthly virtual get together for people with sleep disorders, their family and friends to have an open, casual discussion about various topics related to living with a sleep disorder. UNIGHT is an opportunity to discuss, share, connect, and just be ourselves.
The month’s UNIGHT is Monday, August 28 at 7:00 PM (Eastern) / 4:00 PM (Pacific) for a discussion about “Legislative Advocacy” with special guest Julie Flygare, President and CEO of Project Sleep.
Julie Flygare, JD, President & CEO of Project Sleep, is an award-winning author of “Wide Awake and Dreaming: A Memoir of Narcolepsy.” Since receiving a diagnosis of narcolepsy with cataplexy in 2007, Julie advanced her leadership in the sleep and healthcare space through speaking engagements, publications, earned media, collaborations, and advocacy and awareness initiatives. She received her B.A. from Brown University in 2005 and her J.D. from Boston College Law School in 2009, focusing on health law, policy, and rare disease drug development. On March 22, 2022, Julie delivered the TEDx Talk, “What Can You Learn from a Professional Dreamer?“
Registration for UNIGHT is FREE!
Each UNIGHT meeting is a great opportunity for everyone to discuss, share, connect and just be ourselves.
Zoom link will be sent via email after registration.

Please note: Our UNIGHT virtual forum is educational and supportive in nature and will offer self-care strategies to help you in your daily life. However, the group will not engage in rendering any psychological or healthcare advice for any particular individual or situation, and will not provide medical, mental health, or any other type of health-related service. No diagnosis, treatment recommendations, medication advice, or any other type of medical or mental health recommendations will be offered. Our support group is not a substitute for, or alternative to, treatment by a licensed medical professional. Always seek the advice of your own physician or another qualified health provider with any questions you may have regarding your medical condition. The Hypersomnia Foundation does not recommend or endorse any specific tests, physicians, lawyers, legal advisers, products, medications, procedures, opinions, or other information that may be referenced on its website or during any online support groups. UNIGHT is not a focus group and is not part of a research study and there is no compensation for attending.

VIRTUAL and IN-PERSON - Philadelphia, PA - #BeyondSleepySatellite HF Conference
2023-09-23 10:00 - 15:00 | Delta Hotel by Marritt – Philadelphia Airport, 500 Stevens Drive, Philadelphia, PA, 19113, United States
The Hypersomnia Foundation is hosting a series of one-day hybrid conferences throughout the United States, providing a wonderful opportunity to connect with others living life with a sleep disorder. Our next #BeyondSleepySatellite event is in Philadelphia on Saturday, September 23, 2023 from 10:00 a.m. to 3:00 p.m. (ET) at the Delta Hotel by Marriott / Philadelphia Airport.
The day kicks-off with a 9:00 a.m. breakfast before heading into a day of presentations, breakout sessions, ample Q&A, and a panel discussion. The day’s agenda, including sessions and speakers, can be found HERE.
Use the links below to download and/or view materials from this event:

Hypersomnia Foundation Top Resources
Follow the Hypersomnia Foundation on Social Media
Lumryz Informational Brochure (Avadel Pharmaceuticals)
I Have IH Campaign Survey Results (Hypersomnia Foundation and Jazz Pharmaceuticals)
IH Symptom Quiz and Idiopathic Hypersomnia Severity Scale (Jazz Pharmaceuticals)
Living with IH – What You Need to Know (Jazz Pharmaceuticals)
“Uncovering the Real-World Impact of Idiopathic Hypersomnia” – a video presentation by Marisa Whalen, PharmD, Medical Director of US Medical Affairs at Jazz Pharmaceuticals
“Clinical Study with KP1077 in Adults with Idiopathic Hypersomnia” – a video presentation by Dr. Rene Braeckman , Vice President of Clinical Development at Zevra Therapeutics and Christopher L. Drake, PhD, FAASM, Board-Certified Sleep Specialist, Professor of Medicine at the Michigan State College of Human Medicine, and Director of Sleep Research for Henry Ford Health.

Registration for #BeyondSleepySatellite: Together in Philadelphia is $20 per person. Coming with your family? Each additional family member is $5 per person. Virtual attendance registration is FREE.
For those traveling to Philadelphia, we have secured a room reservation block at the Delta Hotel by Marriott / Philadelphia Airport for $139 per night. Reserve your room today!
We look forward to getting #BeyondSleepy together in Philadelphia!

VIRTUAL: UNIGHT - Discuss. Share. Connect.
2023-09-25 19:00 - 20:30 | NC
UNIGHT – Discuss. Share. Connect.
Monday, September 25 at 7:00 p.m. (Eastern)
Join us every month via Zoom at 7:00 PM (Eastern) / 4:00 PM (Pacific) for UNIGHT – a monthly virtual get together for people with sleep disorders, their family and friends to have an open, casual discussion about various topics related to living with a sleep disorder. UNIGHT is an opportunity to discuss, share, connect, and just be ourselves.
The month’s UNIGHT is Monday, September 25 at 7:00 PM (Eastern) / 4:00 PM (Pacific) for a discussion about “Social Supports” with UNIGHT hosts Matthew Horsnell and Shelly Gonzales, Hypersomnia Foundation Board member Michael Sparace, and special guest, Hollis Rhone.
Hollis is a 22-year-old person with IH who was diagnosed when she was entering her fourth year at McGill University. She is currently in her fifth year at McGill completing a Bachelor of Arts & Science in Chemistry and Anthropology. Hollis recently joined the Hypersomnia Foundation’s Patient Advisory Council, and she is the captain of the McGill University Sailing Team this season.
Registration for UNIGHT is FREE!
Each UNIGHT meeting is a great opportunity for everyone to discuss, share, connect and just be ourselves.
Zoom link will be sent via email after registration.
Please note: Our UNIGHT virtual forum is educational and supportive in nature and will offer self-care strategies to help you in your daily life. However, the group will not engage in rendering any psychological or healthcare advice for any particular individual or situation, and will not provide medical, mental health, or any other type of health-related service. No diagnosis, treatment recommendations, medication advice, or any other type of medical or mental health recommendations will be offered. Our support group is not a substitute for, or alternative to, treatment by a licensed medical professional. Always seek the advice of your own physician or another qualified health provider with any questions you may have regarding your medical condition. The Hypersomnia Foundation does not recommend or endorse any specific tests, physicians, lawyers, legal advisers, products, medications, procedures, opinions, or other information that may be referenced on its website or during any online support groups. UNIGHT is not a focus group and is not part of a research study and there is no compensation for attending.

VIRTUAL: UNIGHT - Discuss. Share. Connect.
2023-11-27 19:00 - 21:00 | NC
UNIGHT – Discuss. Share. Connect.
Monday, November 27 at 7:00 p.m. (Eastern)
Join us every month via Zoom at 7:00 PM (Eastern) / 4:00 PM (Pacific) for UNIGHT – a monthly virtual get together for people with sleep disorders, their family and friends to have an open, casual discussion about various topics related to living with a sleep disorder. UNIGHT is an opportunity to discuss, share, connect, and just be ourselves.
The month’s UNIGHT is Monday, November 27 and we will have a discussion with Dr. David Plante about “Prevalence and Course of Idiopathic Hypersomnia.” Read more about Dr. Plante HERE.
Registration for UNIGHT is FREE!
Each UNIGHT meeting is a great opportunity for everyone to discuss, share, connect and just be ourselves.
Zoom link will be sent via email after registration.
Please note: Our UNIGHT virtual forum is educational and supportive in nature and will offer self-care strategies to help you in your daily life. However, the group will not engage in rendering any psychological or healthcare advice for any particular individual or situation, and will not provide medical, mental health, or any other type of health-related service. No diagnosis, treatment recommendations, medication advice, or any other type of medical or mental health recommendations will be offered. Our support group is not a substitute for, or alternative to, treatment by a licensed medical professional. Always seek the advice of your own physician or another qualified health provider with any questions you may have regarding your medical condition. The Hypersomnia Foundation does not recommend or endorse any specific tests, physicians, lawyers, legal advisers, products, medications, procedures, opinions, or other information that may be referenced on its website or during any online support groups. UNIGHT is not a focus group and is not part of a research study and there is no compensation for attending.

VIRTUAL: UNIGHT - Discuss. Share. Connect.
2023-12-18 19:00 - 21:00 | NC
UNIGHT – Discuss. Share. Connect.
Monday, December 18 at 7:00 p.m. (Eastern) via Zoom
UNIGHT is a free virtual get together for people to have an open, casual discussion about various topics related to living with a sleep disorder. The month’s UNIGHT is Monday, December 18 at 7:00 PM (Eastern) / 4:00 PM (Pacific) with special guest Dr. Shelby Harris discussing “Balancing Relationships in Central Disorders of Hypersomnolence.”
Shelby Harris, PsyD, DBSM is a psychologist and sleep specialist in private practice in New York. She is board certified in Behavioral Sleep Medicine and treats a wide variety of sleep, anxiety and depression issues using evidence-based non-medication treatments.
Her self-help book, The Women’s Guide to Overcoming Insomnia, was published in 2019 by W.W. Norton Books. Dr. Harris holds a dual academic appointment as Clinical Associate Professor at the Albert Einstein College of Medicine in Neurology and Psychiatry. Before going into private practice she was the longstanding director of the Behavioral Sleep Medicine Program at the Sleep-Wake Disorders Center at Montefiore Medical Center in NYC.
Dr. Harris has been an invited columnist for the New York Times, and is frequently in the media, including the New Yorker, Washington Post, CBS Mornings, Today Show, Good Morning America and The Drew Barrymore Show. Dr. Harris can be found on Instagram at @SleepDocShelby where she provides evidence-based information about sleep wellness and sleep disorders.
We hope you’ll join us for the December 18th UNIGHT meeting for a lively discussion with Dr. Shelby Harris.
Registration for UNIGHT is FREE!
Each UNIGHT meeting is a great opportunity for everyone to discuss, share, connect and just be ourselves.
Zoom link will be sent via email after registration.
Please note: Our UNIGHT virtual forum is educational and supportive in nature and will offer self-care strategies to help you in your daily life. However, the group will not engage in rendering any psychological or healthcare advice for any particular individual or situation, and will not provide medical, mental health, or any other type of health-related service. No diagnosis, treatment recommendations, medication advice, or any other type of medical or mental health recommendations will be offered. Our support group is not a substitute for, or alternative to, treatment by a licensed medical professional. Always seek the advice of your own physician or another qualified health provider with any questions you may have regarding your medical condition. The Hypersomnia Foundation does not recommend or endorse any specific tests, physicians, lawyers, legal advisers, products, medications, procedures, opinions, or other information that may be referenced on its website or during any online support groups. UNIGHT is not a focus group and is not part of a research study and there is no compensation for attending.

VIRTUAL: UNIGHT - Discuss. Share. Connect.
2024-01-29 19:00 - 21:00 | NC
UNIGHT – Discuss. Share. Connect.
Monday, January 29 at 7:00 p.m. (Eastern) via Zoom
UNIGHT is a free virtual get together for people to have an open, casual discussion about various topics related to living with a sleep disorder. The month’s UNIGHT is Monday, January 29 at 7:00 PM (Eastern) / 4:00 PM (Pacific) with special guest Dr. Kiran Maski discussing “Treatment Options for IH.”
To learn more about Dr. Maski, please read her bio on our Medical Advisory Board webpage.
Registration for UNIGHT is FREE!
Each UNIGHT meeting is a great opportunity for everyone to discuss, share, connect and just be ourselves.
Zoom link will be sent via email after registration.
Please note: Our UNIGHT virtual forum is educational and supportive in nature and will offer self-care strategies to help you in your daily life. However, the group will not engage in rendering any psychological or healthcare advice for any particular individual or situation, and will not provide medical, mental health, or any other type of health-related service. No diagnosis, treatment recommendations, medication advice, or any other type of medical or mental health recommendations will be offered. Our support group is not a substitute for, or alternative to, treatment by a licensed medical professional. Always seek the advice of your own physician or another qualified health provider with any questions you may have regarding your medical condition. The Hypersomnia Foundation does not recommend or endorse any specific tests, physicians, lawyers, legal advisers, products, medications, procedures, opinions, or other information that may be referenced on its website or during any online support groups. UNIGHT is not a focus group and is not part of a research study and there is no compensation for attending.

VIRTUAL: UNIGHT - Discuss. Share. Connect.
2024-02-26 19:00 - 21:00 | NC
UNIGHT – Discuss. Share. Connect.
Monday, February 26, 2024 at 7:00 p.m. (Eastern) via Zoom
UNIGHT is a free virtual get together for people to have an open, casual discussion about various topics related to living with a sleep disorder. The month’s UNIGHT is Monday, February 26th. We will meet via Zoom at 7:00 PM (Eastern) / 4:00 PM (Pacific) for a discussion with Kimberly McCleary from the Kith Collective to discuss “Illuminate Hypersomnia: Shining Light on the Lived Experience of Idiopathic Hypersomnia.”
Registration for UNIGHT is FREE!
Each UNIGHT meeting is a great opportunity for everyone to discuss, share, connect and just be ourselves.
Zoom link will be sent via email after registration.
ABOUT OUR SPEAKER – KIMBERLY MCCLEARY
Kim has been at the forefront of patient engagement for more than 30 years. She is a nationally regarded subject matter expert on patient-focused medical product development, patient-centered benefit-risk assessment, and organizational change. Kim has authored scores of publications, served on dozens of steering committees and advisory boards, is a sought-after speaker, and has an extensive network of leadership contacts. Her passion for this work is rooted in personal experience, lived as a patient and as a family caregiver.
In early 2018, Kim founded The Kith Collective. Prior to this, Kim was managing director of FasterCures, a center of the Milken Institute, where she led the Patients Count program for five years and also served as interim executive director. For 22 years she was CEO of a national patient organization, the CFIDS Association of America (now the Solve ME/CFS Initiative), leading patient engagement, research, public policy, and development for the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) community. ME/CFS was the first topic selected by FDA for meeting under the patient-focused drug development (PFDD) initiative begun under PDUFA-V in 2013.
ABOUT THE KITH COLLECTIVE
To speed adoption of patient-centricity by life science companies, not-for-profit organizations, and academic research teams, The Kith Collective was established as a professional services consulting firm to serve corporate and not-for-profit clients. We work with teams and communities of all sizes that are focused on various (rare and prevalent) disease states/therapeutic areas, at different stages of maturity in their organizational lifecycle, and with varying degrees of familiarity with patient-centricity and patient-focused medical product development.

Please note: Our UNIGHT virtual forum is educational and supportive in nature and will offer self-care strategies to help you in your daily life. However, the group will not engage in rendering any psychological or healthcare advice for any particular individual or situation, and will not provide medical, mental health, or any other type of health-related service. No diagnosis, treatment recommendations, medication advice, or any other type of medical or mental health recommendations will be offered. Our support group is not a substitute for, or alternative to, treatment by a licensed medical professional. Always seek the advice of your own physician or another qualified health provider with any questions you may have regarding your medical condition. The Hypersomnia Foundation does not recommend or endorse any specific tests, physicians, lawyers, legal advisers, products, medications, procedures, opinions, or other information that may be referenced on its website or during any online support groups. UNIGHT is not a focus group and is not part of a research study and there is no compensation for attending.

VIRTUAL: UNIGHT - Discuss. Share. Connect.
2024-03-25 19:00 - 21:00 | NC
UNIGHT – Discuss. Share. Connect.
Monday, March 25, 2024 at 7:00 p.m. (Eastern) via Zoom
UNIGHT is a free virtual get together for people to have an open, casual discussion about various topics related to living with a sleep disorder. The March UNIGHT meeting will discuss “Nutritional Considerations for Central Disorders of Hypersomnolence” with special guest Ellen Wermter.
ABOUT OUR SPEAKER – ELLEN WERMTER
Ellen is a family nurse practitioner and diplomate in behavioral sleep medicine (DBSM). She is a dedicated sleep professional who actively treats patients full time at Charlottesville Neurology and Sleep Medicine in Virginia. Ellen offers CBT for both insomnia and hypersomnia. In addition to her clinical work, she is a regular contributor with the Better Sleep Council as well as other media outlets about the science of sleep and healthy rest. Ellen enjoys sharing her expertise in the sleep field through guest lecturing at universities and other speaking engagements. She is a member of the medical advisory board for Narcolepsy Network.
Registration for UNIGHT is FREE!
Each UNIGHT meeting is a great opportunity for everyone to discuss, share, connect and just be ourselves.
Zoom link will be sent via email after registration.

Please note: Our UNIGHT virtual forum is educational and supportive in nature and will offer self-care strategies to help you in your daily life. However, the group will not engage in rendering any psychological or healthcare advice for any particular individual or situation, and will not provide medical, mental health, or any other type of health-related service. No diagnosis, treatment recommendations, medication advice, or any other type of medical or mental health recommendations will be offered. Our support group is not a substitute for, or alternative to, treatment by a licensed medical professional. Always seek the advice of your own physician or another qualified health provider with any questions you may have regarding your medical condition. The Hypersomnia Foundation does not recommend or endorse any specific tests, physicians, lawyers, legal advisers, products, medications, procedures, opinions, or other information that may be referenced on its website or during any online support groups. UNIGHT is not a focus group and is not part of a research study and there is no compensation for attending.

VIRTUAL: UNIGHT - Discuss. Share. Connect.
2024-04-29 19:00 - 21:00 | NC
UNIGHT – Discuss. Share. Connect.
Monday, April 29, 2024 at 7:00 p.m. (Eastern) via Zoom
UNIGHT is a free virtual get together for people to have an open, casual discussion about various topics related to living with a sleep disorder. This month’s UNIGHT discusses “Mental Health in Central Disorders of Hypersomnolence” with special guest Alicia Roth, Ph.D. DBSM.

ABOUT OUR SPEAKER – Alicia Roth, Ph.D. DBSM, is a Clinical Health Psychologist and Staff at the Cleveland Clinic Sleep Disorders Center and is board-certified in Behavioral Sleep Medicine. She completed her doctoral training at the University of Florida, Internship at the Baltimore VA, and Behavioral Sleep Medicine Fellowship at The Cleveland Clinic. Her clinical work focuses on treating a range of sleep disorders, including insomnia, circadian rhythm disorders, central disorders of hypersomnia and nightmares, as well as CPAP desensitization.
She has published numerous research articles on the intersection of sleep and chronic health conditions (e.g., fibromyalgia, heart disease, and persons with Alzheimer’s and their caregivers). Dr. Roth’s current research focuses on implementation of population health initiatives for insomnia treatment as well as developing treatments for central disorders of hypersomnia. In 2022, she was awarded the Society of Behavioral Sleep Medicine (SBSM) Early Career BSM Advocacy Award.
Registration for UNIGHT is FREE!
Each UNIGHT meeting is a great opportunity for everyone to discuss, share, connect and just be ourselves.
Zoom link will be sent via email after registration.
Please note: Our UNIGHT virtual forum is educational and supportive in nature and will offer self-care strategies to help you in your daily life. However, the group will not engage in rendering any psychological or healthcare advice for any particular individual or situation, and will not provide medical, mental health, or any other type of health-related service. No diagnosis, treatment recommendations, medication advice, or any other type of medical or mental health recommendations will be offered. Our support group is not a substitute for, or alternative to, treatment by a licensed medical professional. Always seek the advice of your own physician or another qualified health provider with any questions you may have regarding your medical condition. The Hypersomnia Foundation does not recommend or endorse any specific tests, physicians, lawyers, legal advisers, products, medications, procedures, opinions, or other information that may be referenced on its website or during any online support groups. UNIGHT is not a focus group and is not part of a research study and there is no compensation for attending.
