In Case You Missed It! – April 2021

Happy Spring! 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!”

  • REGISTER TODAY: Join us for our first virtual Meet & Greet – “I’m Newly Diagnosed – What Does This Mean?”.
  • #IHAVEIH CAMPAIGN: Jazz Pharmaceuticals and HF team up to raise awareness of IH.
  • RIDE FOR RESEARCH: Join HF’s Sleep/Wake Cyclers Team and raise money for research.
  • NOW ENROLLING: Participate in a survey to help researchers better understand IH.
  • EXCITING RESEARCH: Genomes sequenced from people of diverse backgrounds to understand sleep disorders in minorities.
  • INTERESTING READ: Harmony Biosciences publishes outcomes from their Summit on Sleep Disruption.
  • MUST READ: Sleep disorders mean poorer health, less resilient soldiers.
  • CELEBRATE!: HF joining others to celebrate sleep and health awareness.
  • LET US HELP: We’re here to support your support group!
  • WE LOVE OUR VOLUNTEERS!: Meet HF Volunteer, Sarah Beazley.

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


JOIN US FOR OUR FIRST VIRTUAL MEET & GREET EVENT!

Register today for the Hypersomnia Foundation’s  virtual MEET & GREET, “I’m Newly Diagnosed – What Does This Mean?,” scheduled for May 1 at 1:00 p.m. Eastern/10:00 a.m. Pacific. This will be an interactive meeting with members of our community, to give us a chance to talk informally, and let community members meet one another.

If you have been diagnosed within the last year with IH or a related sleep disorder, you won’t want to miss this event. Space is limited, so REGISTER TODAY!

Join us via Zoom with cameras on, for a lively, short discussion about the resources and organizations that are available to help; then we’ll divide into small groups in breakout rooms to chat. When you have a rare disorder, just being in a room – even a virtual room – with others who know exactly what you’re dealing with can be encouraging.

The meeting will be hosted by Sarah Beazley & Diane Powell of the Hypersomnia Foundation and Diana Kimmel of the Hypersomnia Alliance.

THANK YOU to our Sponsors for supporting this MEET & GREET event: Avadel Pharmaceuticals, Harmony Biosciences, Jazz Pharmaceuticals, and Takeda Pharmaceutical Company.


#IHaveIH AWARENESS CAMPAIGN

Jazz Pharmaceuticals and the Hypersomnia Foundation announced the launch of “I Have IH,” a disease awareness campaign that aims to increase understanding of the debilitating sleep disorder, idiopathic hypersomnia (IH), and empower patients to recognize their symptoms and improve conversations with their care teams. Part of this exciting awareness campaign included a billboard in New York’s Times Square!

To better determine physicians’ understanding of IH, as part of the #IHaveIH campaign, Jazz and the Hypersomnia Foundation conducted a survey of 305 healthcare providers, measuring their perceptions and knowledge of IH.

Together, we are committed to bringing more awareness to IH and other serious sleep disorders and helping people with these conditions at every stage of their journey—from education and diagnosis to treatment and patient assistance.

Read more about the #IHaveIH campaign.


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.


PARTICIPATE IN A SURVEY TO HELP RESEARCHERS BETTER UNDERSTAND IH

Pinpoint Patient Recruiting is searching for people with idiopathic hypersomnia (IH) to participate in a 60-minute web enabled telephone interview (U.S. residents). The goal of the research is to learn more about their experience with #IH to help others as they navigate this condition.

If you have been diagnosed with idiopathic hypersomnia and continue to suffer from common symptoms, you may be eligible to participate. Those who qualify and participate in the studies will receive at $100 for their time and participation. All information and responses will remain confidential.

Interested? To see if you qualify for the study or to get more information, complete this form.


GENOMES SEQUENCED TO BETTER UNDERSTAND SLEEP DISORDERS AFFECTING MINORITIES

Scientists have sequenced genomes of 53,831 people of diverse backgrounds to better understand heart, lung, blood, and sleep disorders, paving the way to new and better treatments and prevention.

The analysis examined the complete genomes of people of diverse backgrounds on different continents. Most are from minority groups, which have been historically underrepresented in genetic studies. The increased representation should translate into better understanding of how heart, lung, blood, and sleep disorders affect minorities and should help reduce longstanding health disparities.

Read the article from “Sleep Review” magazine HERE.


OUTCOMES FROM “SUMMIT ON SLEEP DISRUPTION” PUBLISHED

Harmony Biosciences has announced the publication of a white paper sharing outcomes from a “Summit on Sleep Disruption” the company hosted in December 2020. This summit convened a diverse group of people living with rare diseases, caregivers, and leaders of advocacy organizations, who represented diseases in which sleep disruption has been recognized. Hypersomnia Foundation Board member, Rebecca King, participated in the Summit, and shared, along with fellow participants, the role excessive daytime sleepiness (EDS) plays in their respective conditions.

The goals of the summit were to describe the physical, emotional, social and cognitive challenges faced by patients with EDS; the challenges they face in having this symptom diagnosed; and its overall impact and burden on daily functioning.

Read Harmony Biosciences Press Release and white paper on their “Summit on Sleep Disruption.”


SLEEP DISORDERS MEAN POORER HEALTH, LESS RESILIENT SOLDIERS

To honor the National Sleep Foundation’s Sleep Awareness Week®, the U.S. Army Public Health Center is reminding military personnel and veterans of the benefits of quality sleep and the importance of seeking help if they have trouble sleeping or suspect they may have a health condition that is preventing them from sleeping well.

The U.S. Army Public Health Center is bringing awareness to the immediate adverse impacts sleep disorders have on physical and mental military readiness due to their influence on weight problems, injury risk, and visual and mental acuity. Sleep disturbances are often a clear warning sign of many physiological ailments associated with military members and veterans, such as posttraumatic stress disorder (PTSD), depression, anxiety and suicidality.

For more information and links to additional resources, read the Army Public Health Center’s recent article, “Sleep Disorders Mean Poorer Health, Less Resilient Soldiers”  and also read the RAND Report, “Sleep in the Military: Promoting Healthy Sleep Among U.S. Servicemembers.”

We salute everyone bringing awareness to sleep disorders and importance of sleep health as we celebrate Sleep Awareness Week®.


CELEBRATING HEALTH AND SLEEP AWARENESS

The Hypersomnia Foundation is pleased to join the National Institute of Health celebrating April as National Minority Health Month, a time to raise awareness about health disparities that continue to affect racial and ethnic minority populations and encourage action through health education, early detection, and control of disease complications.

We also join the National Sleep Foundation’s celebration of Sleep Awareness Week® as we promote awareness and education of rarely diagnosed sleep disorders, promote the benefits of sleep health and its importance to overall health and well-being, and improve the lives of people with idiopathic hypersomnia and related sleep disorders.

We also celebrate World Sleep Day® – the World Sleep Society’s annual call to all sleep professionals to advocate and educate the world about the importance of sleep for achieving an optimal quality of life and to improve global health. We thank all the organizations that are joining together to raise awareness about sleep disorders, including idiopathic hypersomnia (IH).

The mission of the Hypersomnia Foundation is to engage, inform and champion our global community to improve the lives of people with idiopathic hypersomnia and related sleep disorders. One of the many ways we fulfill our mission is by providing FREE resources and information about idiopathic hypersomnia and related sleep disorders that can help you and your family navigate through the complexities of IH. All of our resource materials can be downloaded free of charge from our website or sent via email or USPS.


WE’RE HERE TO SUPPORT YOUR SUPPORT GROUP!

Are you part of a support group for people with IH, narcolepsy, Klein-Levin and related sleep disorders? We’d love to meet you! HF Board members would be happy to join a meeting, either as a speaker or a visitor. We want to meet members of the sleep community and hear more about their concerns (while respecting your group’s privacy!).

Please ">send us an email and let us know – you can invite a specific Board member to speak or visit, or ask for a specific topic and we can match you with the right speaker on our Board. (We can provide topic suggestions, too.) Looking forward to meeting you!


MEET HF VOLUNTEER SARAH BEAZLEY

As a nonprofit, we deeply value the passion and energy that each of our volunteers brings to the Hypersomnia Foundation.

Today we are happy to spotlight volunteer and Board member Sarah Beazley, who works on patient outreach and coordinates our PAAC, among other projects.

Sarah recently shared, “I’ve just become the board liaison for PAAC – our Patient Advocacy & Advisory Board, and have been working with them on several projects, including an updated ‘Tips for Supporters’ coming soon to our website. I’ll also be hosting HF’s next virtual event – more information coming soon! I’m looking forward to it, but I will be even more excited when we can finally hold an in-person HF conference! I can’t wait to meet members of our community.”

We are grateful for the willingness of all of our volunteers to support the sleep disorder community in meaningful ways! THANK YOU!

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