Hypersomnia Foundation

Thank you for being part of this journey to raise at least $30,000 by the end of the year.

Your donation supports our research award programs, international patient registry, the production of educational videos and resources, workshops and events, advocacy, outreach, and more. We can’t do this without YOU!

We’re committed to improving the lives of people living with idiopathic hypersomnia and related sleep disorders. Some ways we do this include keeping you aware of the latest clinical trial opportunities, informing you of important results of clinical trials, and offering insightful resources on our website.

Over the next year, you’ll see new video content on YouTube and social media, an updated website, the Conference in Houston in June, informative email newsletters, and much more.

If you haven't donated yet, go donate (link in bio)! If you've already donated and are still looking to help, consider sharing this link hypersomniafoundation.org/donate/ with your family, friends, and social networks.

Reminder – every 👏 dollar 👏 counts 👏. There is no such thing as too small of a donation up to $15,000 will be matched by a generous donor.

Mark your calendar for April 11, 2024 for a first-of-its-kind opportunity for members of the idiopathic hypersomnia (IH) community to express their experiences, needs, and treatment priorities directly to staff from the U.S. Food and Drug Administration, biopharmaceutical companies investing in IH therapies, research institutions, and healthcare clinics.

The Illuminate Hypersomnia meeting, known as an “externally led patient-focused drug development meeting,” is a collaboration of Hypersomnia Foundation with Sleep Consortium and other sleep-related patient advocacy organizations across the world. It will be virtual, streamed live for free, and a recording will be available immediately for on-demand viewing.

Learn more about the Illuminate Hypersomnia initiative, the partnering organizations and sponsors, and how you can stay informed and get involved through this press release, issued today: https://bit.ly/Save-the-date-IH

New community resource! Our friends at recently launched the to provide free and personalized support and resources to people facing sleep issues and .

All of us at Hypersomnia Foundation share Project Sleep's goals to reduce delays to accurate sleep disorder diagnoses and to help patients better navigate their healthcare journey. Join us in spreading the word: project-sleep.com/helpline

How does holiday stress affect relationships? How can people with hypersomnolence disorders better navigate relationships? Join us for this discussion by registering now for the upcoming December UNIGHT — our monthly free virtual get-together for people with hypersomnia sleep disorders and their family and friends.⁠
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Join us Monday, December 18th via Zoom at 7:00 PM (Eastern) / 4:00 PM (Pacific) with special guest host Dr. Shelby Harris as she leads a discussion on "Balancing Relationships in Central Disorders of Hypersomnolence."⁠
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We welcome everyone and anyone to join, listen, share, and connect! Click in bio to register.⁠
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Register Here: UNIGHTdec18HF.eventbrite.com
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Let’s get !⁠
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UNIGHT is not a focus group and is not part of a research study and there is no compensation for attending.

Don't miss your chance to be a part of ! Huge thanks to today’s donors; we're thrilled at how quickly we're making our way towards our goal of raising at least $30,000. Whether you can give $5 or $5000, your gift is helping us impact research, programs, support, awareness, and education.

Donate Here: hypersomniafoundation.org/donate/

Come celebrate with us! We're making our way towards our goal of raising at least $30,000 through the end of the year during this day of giving.

This past September, Rebecca King, a Hypersomnia Foundation board member, presented at Satellite in Philadelphia: Getting the 'Idiopathic' out of Idiopathic Hypersomnia (and Narcolepsy type 2): How our Community Funds Research. In her talk, she shares, “We don't even know today whether or not idiopathic hypersomnia is a disruption of wake or a disruption of sleep. Even the basic questions we can't answer. So this is a really, really difficult road doing research into hypersomnias, but we want to try. And the Hypersomnia Foundation has made it part of our mission to figure out how we can support our researchers as they struggle to answer the questions.”

One of the ways we’re working to support researchers is through our partnership with the American Academy of Sleep Medicine Foundation (AASMF). We initiated this partnership in 2021 and helped turn it into an annual hypersomnia research program. For every $1 we put into a research grant, AASMF puts in $3. AASMF also funds additional hypersomnia research grants that wouldn’t have been funded without this partnership, stretching your donation dollars to the fullest.
When we co-fund, every $1 donated by HF turns into $4 for research!

Join us in our efforts to fund research!

If you haven't donated yet, go donate! If you've already donated, please consider one more gift: share this link hypersomniafoundation.org/donate/ with your family, friends, and social networks.

Reminder – every 👏 dollar 👏 counts 👏. There is no such thing as too small of a donation up to $15,000 will be matched by a generous donor. We can only accomplish this goal if everyone joins in. Let's do it!

is here! We need your help to raise at least $30,000 to help fund programs like UNIGHT.

UNIGHT is our monthly free virtual get-together for people with hypersomnia sleep disorders and their family and friends.⁠ We encourage people to join, listen, share, and connect with the sleep community and advocates.

The best referral we could possibly get is from donors like you. In addition to donating today, please consider posting on your social pages and sharing our posts with your friends and family. Thank you for making our work possible!

Click here to donate: https://www.hypersomniafoundation.org/donate/

How much good can be done in a single day? Let’s find out! Our goal is to raise at least $30,000 through the end of the year, and we're starting tomorrow on —will you help? Can you feel the giving?

Every year, we look forward to connecting with our amazing community to fund our work in the year ahead. Stretch your social-sharing muscles so they're ready for tomorrow. We're so grateful for you!

is less than a week away! We’re pumped to help the sleep community by raising at least $30,000 through the end of the year to fund research, programs, support, awareness, and education. Join our movement today, and don’t forget to tell ALL your friends!

Every 👏 dollar 👏 counts 👏. There is no such thing as too small of a donation. Up to $15,000 will be matched by a generous donor. We can only accomplish this goal if everyone joins in. Let's do it!

Donate here: https://www.hypersomniafoundation.org/donate/

, the year's coolest day to donate, is November 28, 2023! We’ve set a goal to raise at least $30,000 through the end of the year — up to $15,000 will be matched by a generous donor.

These funds will help us impact research, programs, support, awareness, and education. Consider putting a few $ aside right now so you can join our movement and encourage your friends to chip in as well.

This week Rebecca King, a Hypersomnia Foundation board member, joined a coalition of sleep advocates and organizations for the first-ever Sleep Equity Convening at the White House. Here is what she had to say about the experience.

"It was an honor to represent the Hypersomnia Foundation at the first-ever White House listening session on the importance of sleep and sleep equity. It was eye-opening for many to learn that one in five Americans have a sleep disorder and the majority are undiagnosed, leading to major health risks and decreased productivity for our country. We discussed how people in underrepresented groups, especially Black and Hispanic populations, are not getting enough sleep and the problem is growing worse every year. The group shared some good news too, such as the fact that the American Heart Association has added sleep to their "Essential 8" components of cardiovascular health, and the results of new research on the best way to reach Black men to share the news about OSA sleep disorders. It was a great start to an important conversation that we hope to continue in the future."

A special thanks to Project Sleep, Julie Flygare, and Lindsay Scola for organizing this event. It was a pleasure to participate.

Good news! A new medicine for excessive daytime sleepiness (EDS) is moving forward. Suven Life Sciences is studying samelisant, which works similarly to Harmony Biosciences' medicine, pitolisant.

Suven recently announced some results from their proof-of-concept study looking at:

- How well samelisant works in adults who have narcolepsy type 1 or 2

- How safe samelisant is

The company stated, "Samelisant was generally safe and well tolerated." Samelisant also significantly improved EDS.

Read the full press release at https://tinyurl.com/2rpkd3e5

Share Your Experiences With Idiopathic Hypersomnia and Earn $50 or More

Pinpoint Patient Recruiting has several paid virtual market research opportunities for people who are living with idiopathic hypersomnia to share their experiences. If you have been diagnosed with idiopathic hypersomnia, you may be eligible to participate in one or more online surveys. Those who qualify for and complete at least one survey will receive $50 or more as a thank you. All information and responses will remain confidential.

Interested?

To see if you qualify for the study or to get more information, please visit pinpointpatientrecruiting.com/ih-survey-hf or contact Ingles Adams at [email protected].

Illuminate what it’s like to live with IH!

Hypersomnia Foundation is partnering with Sleep Consortium and organizations around the world to Illuminate Hypersomnia. This landmark initiative will bring members of the global IH community together to shine a light on the lived experience of IH and what matters most to people living with IH for effective treatment.

A focal point of the Illuminate Hypersomnia initiative is a virtual patient-focused drug development (PFDD) meeting with the FDA to be held in Spring 2024 where people living with IH are the experts. There will be opportunities to share what it’s like to live with IH, what you’re currently doing to treat and manage IH, and what treatment benefits matter most to you. Sign up today to receive updates about the meeting date, a companion survey in advance of the meeting, and other events coming in early 2024!

Learn more: bit.ly/illuminate-IH

Sign up for updates: bit.ly/IH-up2date

How common is idiopathic hypersomnia (IH)? How does it affect the people who have it throughout their lives? Join us for this discussion by registering now for the upcoming November UNIGHT — our monthly free virtual get-together for people with hypersomnia sleep disorders and their family and friends.
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Join us Monday, November 27th via Zoom at 7:00 PM (Eastern) / 4:00 PM (Pacific) with special guest host Dr. David Plante as he leads a discussion on "Prevalence and Course of Idiopathic Hypersomnia."⁠
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We welcome everyone and anyone to join, listen, share, and connect!

Register Here: https://UNIGHTnov27HF.eventbrite.com

Let’s get !

UNIGHT is not a focus group and is not part of a research study and there is no compensation for attending.

We're grateful for the opportunity to have attended the World Sleep Congress in Rio de Janeiro, Brazil, on October 20th to 25th.

During we were able to meet with international patient advocacy groups, spread awareness about the Hypersomnia Foundation, connect with our pharma partners, attend presentations, and more!

It was an incredible time of learning and connection. Check out highlights from !

New topline results from the phase 3 INTUNE study (NCT05156047) assessing pitolisant (Wakix; Harmony Biosciences) in patients with idiopathic hypersomnia (IH) showed no statistically significant difference between the therapy and placebo in the primary end point of improving excessive daytime sleepiness (EDS). Despite these results, the treatment reached statistical significance in additional prespecified end points including disease severity and functional status.

Read more - https://tinyurl.com/3mxs5rct

We are excited to attend in Rio de Janeiro, Brazil. is a global scientific congress bringing the best of sleep medicine and research together.

We are attending sessions on the latest IH research and raising awareness about the foundation.

Join UNIGHT's special guest host Anjel Burgess, JD, as she leads a discussion on "Navigating the Disability Process"⁠ on Monday, October 30th via Zoom at 7:00 PM (Eastern) / 4:00 PM (Pacific).

She will walk attendees through the process for qualifying for disability. She'll help you understand if you should consider being on disability. ⁠

Find out all about the process and more by registering now for the upcoming October UNIGHT — HF’s monthly free virtual get-together for people with sleep disorders, family, and friends.⁠
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We welcome everyone and anyone to join, listen, share, and connect! Click in the bio to register, or...⁠
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Register Here: https://unightoct30.eventbrite.com/
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Let’s get !⁠
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UNIGHT is not a focus group and is not part of a research study. There is no compensation for attending.

A message from Jeffrey Dayno, President and CEO of Harmony Biosciences:

First, I would like to take a moment to thank all the patients and their families, and the clinical investigators and their staff, who participated in the INTUNE Study, along with all of my colleagues at Harmony who oversaw the conduct of this trial and supported the patients and clinicians who were involved in the trial.

We were encouraged by the magnitude of the response seen in the initial open-label treatment period and by the trends in the data that clearly showed patients experience a positive clinical effect with pitolisant. However, on the primary endpoint, the Epworth Sleepiness Scale, during the randomized withdrawal portion, the pitolisant group and the placebo group did not show enough of a difference to achieve statistical significance. Despite this, the pitolisant group did show positive trends overall on this scale and on other measurements, including on a measurement called the Idiopathic Hypersomnia Severity Scale, which is a tool that measures the entirety of the IH symptom experience.

With this information, many of you may have questions about the path forward for pitolisant as a potential treatment option for adults with IH. I want to assure you that we remain committed to the IH patient community and have already begun a full evaluation of the data from the INTUNE Study to better understand these initial results. We understand the strong desire by the IH community to have a non-scheduled treatment option. We saw this interest demonstrated in the rapid enrollment in this study. We continue to firmly believe in pitolisant as a promising therapy for adult patients with IH and will work with the FDA to determine next steps and a path forward to achieve this result. On behalf of Harmony, my thanks to the IH Community for your ongoing support.

Learn more here: https://tinyurl.com/3kxdrvjs

How do you qualify for disability? What is the process? Should I be on disability? ⁠Find out all about the process and more by registering now for the upcoming October UNIGHT - Hypersomnia Foundation’s monthly FREE virtual get-together for people with sleep disorders, family, and friends.⁠
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Join us Monday, October 30th via Zoom at 7:00 PM (Eastern) / 4:00 PM (Pacific) with special guest host Anjel Burgess, JD, as she leads a discussion on "Navigating the Disability Process."⁠
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We welcome everyone and anyone to join, listen, share, and connect!

𝙍𝙀𝙂𝙄𝙎𝙏𝙀𝙍 𝙃𝙀𝙍𝙀: https://unightoct30.eventbrite.com/

Let’s get !

Living with an invisible illness affects all areas of your life. Here is part 2 on ways you can better improve your quality of life.

For more information, go to: hypersomniafoundation.org

Living with an invisible illness affects all areas of your life, such as the constant questioning of whether this is a symptom or a side effect of treatment. Will I have the energy to do X, Y, Z? How do I communicate to my family that I'm not lazy? Here are some suggestions on ways you can better improve your quality of life.

For more information go to: hypersomniafoundation.org

Zevra Therapeutics, Inc., a rare disease therapeutics company, announced interim data from the open-label dose titration phase of the Phase 2 clinical trial evaluating KP1077 in patients with idiopathic hypersomnia (IH). The data provide valuable information on the primary endpoint of the trial, which is the safety and tolerability of KP1077 in patients with IH, as well as insights related to the effective dose range and regimen. Topline data from the completed trial are expected in the first half of 2024 after all patients have completed the double-blind withdrawal phase. The combined open-label interim and upcoming topline data are expected to also provide information related to a number of secondary and exploratory endpoints, including excessive daytime sleepiness, sleep inertia, and brain fog.

“The open-label data yielded key insights for the design of the Phase 3 trial and potential unique benefits of KP1077 as a treatment for IH, if approved,” said Rene Braeckman, Ph.D., Senior Vice President of Clinical Development. “The interim data from the open-label portion of this trial demonstrate that KP1077 is well-tolerated at all dose levels and both dosing regimens with adverse events that are typical for stimulants and are mostly mild in severity. These results are consistent with data from our previous Phase 1 trial studying serdexmethylphenidate (SDX), which is our prodrug of d-methylphenidate and the sole active pharmaceutical ingredient in KP1077, and indicating no greater cardiovascular safety risk despite higher overall exposure levels when compared to both immediate and long-acting methylphenidate products currently used off-label for the treatment of IH. We believe KP1077, if approved, could provide a differentiated treatment option for patients underserved by currently available therapies.”

The interim data related to the secondary and exploratory endpoints showed marked improvements in patient-reported assessments of key IH symptoms from the open-label titration phase, including excessive daytime sleepiness, sleep inertia, and brain fog. The improvements in symptoms were similar after both once-per-day dosing of KP1077 (in the evening, just before bedtime), and twice-per-day dosing (half the daily dose after awakening in the morning and half the daily dose just before bedtime). The results from the completed Phase 2 trial are expected to inform the final design of the anticipated Phase 3 trial in IH, which is expected to be initiated by the end of 2024.

Learn more here: https://t.ly/ZROlW