In Case You Missed It! – August 2020

We hope everyone is staying healthy and enjoying the summer as best as possible! We are grateful to be able to keep in contact with our community through social media, email, and SomnusNooze. If you’ve missed any of the latest news we’ve shared, don’t worry! Get up to date with this latest edition of “In Case You Missed It!”

  • NEW WEBSITE: Take a video tour of our new website and check out our FREE resources!
  • WATCH AND LEARN: Watch a new video on IH and Disability recorded at our Conference in Baltimore.
  • NEWLY DIAGNOSED?: Five things you should know to help you understand and cope with your sleep disorder.
  • SCHOLARSHIPS AVAILABLE: Applications open for educational scholarships for adults.
  • ADVOCACY ACTION ALERT: Ask U.S. Congress to support Rare Disease Patients in the next COVID-19 Relief package.
  • INSPIRATIONAL ARTICLE: Read how parents of children with rare genetic diseases are working together to raise funds for research.
  • FDA APPROVES DRUG: Xywav receives approval for treatment for cataplexy or excessive daytime sleepiness in narcolepsy patients.

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


WE HAVE A NEW WEBSITE!

It’s been a busy summer behind the scenes at the Hypersomnia Foundation, but Board members Sarah Beazley and Diane Powell recently hopped online for a virtual meet-up to tour our redesigned website.

When you visit our website you can:

  • Learn more about who we are, what we do, and the significant achievements we have made as an organization.
  • Check out our guide on how to choose a healthcare provider that’s right for you! Then find a sleep specialist experienced in the treatment of people with hypersomnias, with our Healthcare Provider Directory. Our directory is always growing—thanks to input from you. If you are a physician specializing in sleep disorders, please consider joining our registry. If you are a patient or caregiver and would like to recommend that your healthcare provider join our directory, please email with your provider’s name and contact information and we will reach out to them.
  • Get information about current clinical trials. If you are thinking about taking part in a research study or clinical trial, there’s a lot to consider! Find answers to questions you may have in our Research Study Participant FAQs; then review our list of studies currently recruiting participants.
  • Join the International Patient Registry at CoRDS (Coordination of Rare Diseases at Sanford).
  • Read through and share our “Education Essentials Guides” (A big shout out to Board member Mary King, who put in many hours developing these incredible resources)!
  • Download free resource materials about IH and related sleep disorders.
  • Peruse issues of our newsletter SomnusNooze.
  • Watch informational videos by some of our esteemed Medical and Scientific Advisory Board members who presented at our conferences and education days.
  • And so much more!

Visit our website often and contact us with questions at . Your support enables us to maintain our commitment to improving the lives of people living with idiopathic hypersomnia and related sleep disorders.


NEW VIDEO RELEASED—”IH AND DISABILITY: WHAT YOU NEED TO KNOW”

We are excited to release Ms. Anjel Burgess’ presentation from the Hypersomnia Foundation Conference in Baltimore.

In this video, “IH and Disability: What You Need to Know”, Ms. Burgess, a disability attorney, discusses her work advising clients, including idiopathic hypersomnia patients, on their rights and obligations with respect to long-term disability.

Watch Ms. Burgess’ video and download her accompanying PowerPoint slides.

Also, review the articles Ms. Burgess has written on Social Security Disability for our newsletter SomnusNooze:


I HAVE A SLEEP DISORDER… NOW WHAT?

If you’ve just been diagnosed with idiopathic hypersomnia (IH) or a related sleep disorder, the Hypersomnia Foundation has compiled FIVE THINGS FOR YOU TO KNOW, to give you the information and resources you need to help you take the first steps forward in understanding and coping with your new diagnosis.

We’re here to help you understand and provide support as you go through the process of diagnosis and treatment, finding a healthcare provider with experience treating hypersomnias, and help you become empowered and involved, both for yourself, and for the future of all those with IH and related disorders.


EDUCATIONAL SCHOLARSHIPS AVAILABLE FOR ADULTS

It’s Time to Pursue Your Dream! Living with a rare disease means managing unique challenges, including frequent doctor visits, rigorous treatment regimens, hospitalizations, and disruptions to daily life. Individuals living with rare diseases often face disparities in achieving traditional life milestones.

The EveryLife Foundation for Rare Diseases has established the #RAREis Scholarship Fund—to enrich the lives of adults living with rare diseases by providing support for their educational pursuits. Thanks to the support of Horizon Therapeutics, one-time awards of $5,000 each will be granted to up to 32 recipients (age 17 and up) for the Spring 2021 semester.

Deadline for applications is August 28th, 2020 @ 3:00 p.m. CDT

Visit the #RAREis Scholarship Fund website for more information.


ADVOCACY ACTION ALERT! 

Ask the U.S. Congress to support Rare Disease Patients in the next Coronavirus Relief Package. Policymakers in Washington are working on the next COVID-19 relief legislation. More than ever, rare disease patients need access to safe and affordable health care for both routine and COVID-19 related treatments.

Send a message to your Members of Congress asking that important rare disease patient provisions are included in the next coronavirus relief package.

Typically, rare disease patients receive care in hospitals, health centers, and doctor’s offices. However, during the COVID-19 pandemic, it’s increasingly important for rare disease patients to be able to receive their care through telemedicine to minimize their risk of contagion and serious illness.

We ask that Congress make permanent changes to improve telehealth flexibility, to allow Medicare and Medicaid patients to continue to receive their treatment at home. In addition, Congress must increase funding for state Medicaid programs, so that they may continue to provide critical treatment and testing for the millions of patients who depend on Medicaid coverage.


THE WILDERNESS OF RARE GENETIC DISEASES AND THE PARENTS NAVIGATING IT

Parents of children with a rare disease are often left charting a world of unknowns. They can feel alone as they navigate a sea of acronyms, a bevy of doctor’s offices, and piles of unpaid bills.

Many parents have discovered power in numbers as they connect with other families experiencing what they are going through and actively join forces to raise money and support research that could change their child’s life.

Read the personal stories of these parents in this New York Times article, “The Wilderness of Rare Genetic Diseases and the Parents Navigating It”, and be inspired to work together to get #BeyondSleepy!


FDA APPROVES DRUG FOR NARCOLEPSY PATIENTS

Jazz Pharmaceuticals announces U.S. Food and Drug Administration approval of Xywav, a treatment for cataplexy or excessive daytime sleepiness in narcolepsy patients.

IH patients are still waiting for the first FDA-approved treatment, but it is encouraging to note that several clinical trials are in process, by Jazz and others!

Visit our website for current information about ongoing research studies.

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