It’s been a busy year so far! Let’s get up to date with the news we’ve shared via social media with this latest edition of “In Case You Missed It!”
- NEWLY RELEASED VIDEO: HF’s virtual event “Your Best Self: New Ways of Thinking About Disability & Support”
- RIDE FOR RESEARCH: Join HF’s Sleep/Wake Cyclers Team and raise money for research
- WEBSITE UPDATES: Diagnosing narcolepsy in African Americans
- NOW ENROLLING: Participate in the Real-World Idiopathic Hypersomnia Outcomes Patient Survey
- ADVOCACY ALERT: Email your members of Congress now to help support the STAT ACT (Speeding Therapy Access Today)
- MUST READ: The National Economic Burden of Rare Diseases Study has been published
- TALK TO YOUR PHYSICIAN: Questions to ask and information to share with a healthcare provider
- HONORING RARE DISEASE DAY: February 28, 2021
Don’t worry if you’ve missed anything. We’ve got you covered!
𝗡𝗘𝗪𝗟𝗬 𝗥𝗘𝗟𝗘𝗔𝗦𝗘𝗗 𝗩𝗜𝗗𝗘𝗢!
We are excited to release the video recording of “YOUR BEST SELF: New Ways of Thinking About Disability & Support” – the Hypersomnia Foundation’s recent virtual hypersomnia educational event held on January 30, 2021.
Recorded sessions include:
- Anjel Burgess, Esq., of Burgess & Christensen, Attorneys at Law in Atlanta, is a prominent disability attorney and HF Board member and has represented numerous people with IH who are applying for disability. She shares her observations of the emotional aspects of that journey, and how to manage those hurdles.
- Diana Kimmel of the Hypersomnia Alliance is a well-known (and extraordinary) patient advocate in the IH community, co-organizes the popular “Snooze Cruise” retreats, and facilitates a support group in Atlanta. Diana shares what makes a support group successful, and the nuts and bolts of organizing virtual and in-person groups.
Watch and share with family and friends and be sure to check out our other videos and podcasts.
JOIN HF’S SLEEP/WAKE CYCLERS TEAM AND RAISE MONEY FOR RESEARCH
The Hypersomnia Foundation is forming a virtual bike team, the Sleep/Wake Cyclers, to raise money for research on idiopathic hypersomnia and related sleep disorders. Our inaugural ride will be Saturday, June 12, 2021.
All ages and abilities are welcome. Whether you ride two miles or two hundred, ride on a bike trail, around your neighborhood, on a stationary bike in your living room, or across the country on your Harley, anyone who wants to help us raise $20,000 for hypersomnia research is welcome to join our team!
For more information, go to our “Sleep/Wake Cyclers” page.
MEET THE NEW CHAIRS OF OUR MEDICAL AND SCIENTIFIC ADVISORY BOARDS
We are very pleased to announce David Plante, MD, PhD, is the new Chair of our Medical Advisory Board and Thanh Dang-Vu, MD, PhD, is the new Chair of our Scientific Advisory Board.
Dr. Plante is Assistant Professor of Psychiatry at the University of Wisconsin School of Medicine and Public Health. His current research uses high-density electroencephalography to study sleep and wakefulness in hypersomnia and affective disorders.
Read more about Dr. Plante and the members of the Medical Advisory Board.
Dr. Dang-Vu is Associate Professor at Concordia University in Montreal, where he currently holds the University Research Chair in Sleep, Neuroimaging and Cognitive Health. His research is focused, in part, on the pathophysiology of sleep disorders using multimodal neuroimaging and EEG.
Read more about Dr. Dang-Vu and the members of the Scientific Advisory Board.
We sincerely thank Dr. Lynn Marie Trotti, former Chair of the Medical Advisory Board and Dr. David Rye, former Chair of the Scientific Advisory Board. We greatly appreciate their years of dedication and leadership.
LOOKING TO VOLUNTEER?
This council consists of patient and supporter volunteers who meet monthly by phone conference to offer feedback to HF and share the needs of the hypersomnia community. They play a very valuable role for HF and the hypersomnia community at large.
Membership requires commitment to a monthly conference call, with possible email correspondence in-between. Members have IH or a related sleep disorder, or have a loved one with one of these rare disorders. The group is small so that all members can join in the discussion, and members typically rotate after a period of time.
If you are interested in volunteering, please email with the subject line “PAAC.”
XYWAV Update – Jazz Pharmaceuticals has announced the completion of the rolling submission for the supplemental New Drug Application (sNDA) to the U.S. Food and Drug Administration seeking marketing approval for Xywav™ (calcium, magnesium, potassium, and sodium oxybates) oral solution for the treatment of adult patients with idiopathic hypersomnia. If approved, Xywav will be the first and only approved treatment in the U.S. for adults with idiopathic hypersomnia.
“This sNDA submission brings us one step closer to making this important treatment option available to patients living with idiopathic hypersomnia,” said Robert Iannone, MD, MSCE, Executive Vice President, Research and Development & Chief Medical Officer of Jazz Pharmaceuticals.
Read Jazz Pharmaceuticals complete announcement HERE.
FT218 Update – Avadel announced that after years in clinical development, the U.S. Food and Drug Administration’s decision date for once-nightly FT218 for the treatment of narcolepsy is finally on the horizon.
The FDA has accepted Avadel’s New Drug Application for once-nightly FT218 for review and assigned a target Prescription Drug User Fee Act action date of October 15, 2021.
Read Avadel’s full announcement HERE.
DIAGNOSING NARCOLEPSY IN AFRICAN AMERICANS
We’ve updated the “Diagnosis” section of our “About Idiopathic Hypersomnia” page and the “Diagnosing Narcolepsy” section of our “About Related Sleep Disorders” page by adding information regarding the different presentation of hypersomnias in African Americans and the resultant importance of hypocretin testing for diagnosis.
The summary article “Differences in Hypersomnia Disorder Symptoms Among African Americans,” includes links to the 2015 study entitled “Narcolepsy in African Americans” and HF Medical Advisory Board member Dr. Kiran Maski’s summary of this study in her editorial “Understanding Racial Differences in Narcolepsy Symptoms May Improve Diagnosis.”
NOW ENROLLING PATIENTS WITH IH FOR AN ONLINE SURVEY
Jazz Pharmaceuticals, in collaboration with Stratevi and inVibe Labs, is conducting a real-world idiopathic hypersomnia outcomes patient survey to understand patient experiences with idiopathic hypersomnia, how it impacts their lives, and their perspectives regarding their current treatment regimen. Participation involves completing an online survey. The participant may also be selected to answer several open-ended questions through an automated voice response system, which participants would call into using their mobile phone.
If the participant is eligible, their participation in this online patient survey should take approximately 30 minutes and they will be compensated with a $50 Amazon.com gift certificate for their time. If they are selected to also answer the open-ended questions through the automated voice response system, it is expected to take about 10-15 additional minutes and they will be compensated with a $25 Amazon.com gift certificate upon completion of those questions.
Click HERE for more information about this study and to determine your eligibility. For a list of currently-recruiting clinical trials and research studies, visit our “Clinical Trials/Research Studies” page.
EMAIL YOUR MEMBERS OF CONGRESS TO HELP SUPPORT THE STAT ACT
The Speeding Therapy Access Today (STAT) Act of 2021, H.R. 1730 / S. 670 was officially introduced earlier this week by Senators Amy Klobuchar (D-MN) and Roger Wicker (R-MS) in the Senate and Representatives Gus Bilirakis (R-FL) and G.K. Butterfield (D-NC) in the House of Representatives.
This bipartisan legislation is a result of more than a year of collaborative effort by rare disease community partners and congressional leaders, working to identify opportunities to ensure that all rare disease communities receive access to safe and effective treatments and cures at the earliest moment possible.
The centerpiece of the STAT Act is the creation of a Rare Disease Center of Excellence at the U.S. Food and Drug Administration that will improve the development of and access to therapies for the rare disease community.
The STAT Act will:
- Accelerate rare disease therapy development,
- Optimize interagency coordination,
- Advance science-based regulatory policies, and
- Facilitate access to therapies.
You are a critical piece of the legislative process and can make a difference by making your voice heard by your senators and representatives. Ask them to please stand with you and the more than 30 million Americans living with rare diseases who need therapies…STAT!
FINDINGS PUBLISHED FROM THE NATIONAL ECONOMIC BURDEN OF RARE DISEASES STUDY
EveryLife Foundation for Rare Diseases has published The National Economic Burden of Rare Diseases Study. This study is the first of its kind, providing the most comprehensive assessment of the total economic burden of rare diseases in a single year.
The National Burden of Rare Diseases Study estimated the economic cost of 379 rare diseases reached nearly $1 trillion in the U.S. in 2019. The results help to ensure that the experience of the rare disease community is reflected accurately in policy discussions. This powerful tool can also increase public awareness of the public health crisis of rare disease.
One-third of 89 children and adolescents diagnosed with primary hypersomnia disorders had symptoms of orthostatic intolerance (OI) around the time of initial sleep diagnosis, researchers found in a study published in “Sleep Medicine.”
Study researchers identified 89 pediatric patients with hypersomnia disorders (46 with narcolepsy type 1, 17 with narcolepsy type 2, 18 with idiopathic hypersomnia, 7 with hypersomnia related to medical disorders, and 1 with Klein Levin syndrome) who had been evaluated at the Center for Sleep Medicine at the Mayo Clinic.
Read more in the online edition of “Neurology Advisor.”
QUESTIONS TO ASK AND INFORMATION TO SHARE WITH A HEALTHCARE PROVIDER
ASK QUESTIONS: One of the most important tasks you may confront as a patient is finding and coordinating the best, most supportive healthcare team to meet your needs.
Before contacting a new healthcare provider’s office, review our list of suggested questions to ask and mark the issues that are most important to you.
A provider’s office should not mind spending several minutes to answer your questions, but also consider researching a new healthcare provider on the internet before contacting their office, as this may answer some of your questions, thereby saving your time and theirs.
TALK TO YOUR PHYSICIAN: It can sometimes be difficult remembering changes in your sleep patterns. To make sharing symptoms with your physician easier, consider keeping a sleep diary.
A sleep diary is a record of your sleep patterns, including the time you go to sleep and wake up, over an extended period of time (usually at least two weeks). A sleep diary can be extremely useful in helping doctors make a diagnosis of a sleep disorder or make a better determination of whether to refer a person for a sleep study.
#IHFACT – DID YOU KNOW?
One of the many possible characteristics of IH is sleep drunkenness, sometimes referred to as “severe sleep inertia,” which is defined as an extreme and prolonged difficulty fully awakening, associated with an uncontrollable desire to go back to sleep, which can be accompanied by automatic behavior (performing tasks without conscious self-control and with partial or total loss of memory), disorientation, confusion, irritability, and poor coordination.
HONORING RARE DISEASE DAY – FEBRUARY 28