In Case You Missed It! – December 2019

In Case You Missed It! – December 2019

Happy Holidays! As you enjoy the season with family and friends, we’ll keep you up to date with the news we’ve shared via social media in the latest “In Case You Missed It!”


DOUBLE YOUR DONATION BY DEC. 31!

Our End-of-Year Fundraising Campaign is off to a great start thanks to Dr. David Rye’s parents, who have generously offered to match up to $10,000 in donations to the Hypersomnia Foundation! What an amazing way to support our year-end fundraising campaign AND honor the groundbreaking work of Dr. David Rye and his continued dedication to finding treatments for IH and other rare sleep disorders. Now is the time to MAKE A DONATION and/or create your own personal giving campaign. Together, let’s send a message of THANKS to Dr. David Rye and his parents, for their generous support of the Hypersomnia Foundation.


WHAT WOULD YOU DO MORE OFTEN IF YOU WERE #BEYONDSLEEPY?

The Hypersomnia Foundation raises funds for research to increase the understanding of IH and to discover new treatments so people with IH can do the activities they love more often and live their life #BeyondSleepy.

How can you help spread awareness of IH and the Hypersomnia Foundation? Print or make your own “Let’s Get #BeyondSleepy!” sign and take pictures of you doing what you love. What would you do more often if you were #BeyondSleepy? Share your photos by sending them to us at , or post on your social media with the hashtag #BeyondSleepy. Be sure to make your post public and tag the Hypersomnia Foundation so we can “like” and repost!


JOIN US IN WELCOMING EVAN DESMARAIS – THE HYPERSOMNIA FOUNDATION’S NEW TECHNICAL OFFICER

Evan holds a Bachelor of Science in Computer Science from Worcester Polytechnic Institute, Evan Desmaraisand brings a wealth of knowledge to the foundation with his experience filling technical roles in Healthcare IT and Digital Engagement Software organizations. He specializes in software and web development, as well as IT infrastructure, cloud computing, data analytics, and integration.

Evan became aware of idiopathic hypersomnia, as his wife was diagnosed shortly after they met. Since her diagnosis, Evan has been a supporter of the Hypersomnia Foundation’s mission and is excited to join the organization in an official capacity.

Read More about Evan and his role in helping us get #BeyondSleepy!


MAJOR PHARMACEUTICAL FIRM RECRUITING FOR AN IH ADVISORY BOARD

Are you living with idiopathic hypersomnia and excessive daytime sleepiness? Or is your loved one? You may be able to participate in a half-day Atlanta-area meeting to advise a large pharmaceutical company about what it’s like to live with IH!

A global pharmaceutical company aims to deepen its understanding of the experience of people living with IH by learning directly from people living with IH and their care partners. To support this, the company is looking for people living with IH and their care partners to participate in a half-day advisory board meeting on February 29 or March 7 in Atlanta, Georgia. Participants will be compensated for their time and reimbursed for expenses.

Participants must be aged 18 years or older, U.S. residents, and:

  • Be living with idiopathic hypersomnia and excessive daytime sleepiness, or
  • Be a care partner of someone living with idiopathic hypersomnia and excessive daytime sleepiness.

The company has contracted VOZ Advisors to facilitate the advisory board meeting. If you are interested in the opportunity to share your perspectives about idiopathic hypersomnia or have any questions, please contact Sarah Friedhoff at or call 1-212-620-2753 to arrange for an initial phone screen.


UPCOMING CLINICAL TRIAL!

Takeda Pharmaceutical Company will soon begin recruiting for an upcoming clinical trial. The multicenter study will be conducted in the U.S. and Japan, with an estimated start date of February 12, 2020. The overall duration of treatment in this study is approximately 39 days.

Takeda is NOT YET RECRUITING adults age 18-75 with IH in the U.S., but we will announce via social media and on the Research Studies page of our website when recruitment begins.

Get more details, including clinical trial contact information, HERE.


SPEAKING OUT ON THE HILL!

This past November, Hypersomnia Foundation Board member, Rebecca King, joined representatives from Project Sleep, Wake Up Narcolepsy, Narcolepsy Network, the Sleep Research Society and other patient advocates and organizations for a “Sleep Community Capitol Hill Advocacy Day” in Washington, DC.Great success advocating for IH, narcolepsy, and other sleep disorder research funding at the NIH, VA, and DoD, along with re-invigorating vital public health initiatives focused on sleep at the CDC.More info in this press release from Julie Flygare at Project Sleep.


IH FEATURED IN EMORY HEALTH DIGEST

Struggling with sleeping excessively, this young man traveled from Iceland to Atlanta to get answers from Dr. David Rye. Read about Sigurjon Jakobsson’s journey toward finally being diagnosed with idiopathic hypersomnia in the article “A Life Consumed by Sleep,” featured in the Fall 2019 edition of Emory Health Digest. This article also links to a video segment from “Your Fantastic Mind,” featuring Dr. Rye and Sigurjon, that we highlighted earlier this year.

Share with family and friends who may be struggling to understand IH and other sleep disorders. Together we can get #BeyondSleepy.


SLEEP-RELATED DISORDERS LINKED TO NEUROLOGY AND PSYCHIATRY

A recent review examined sleep-related disorders linked to neurology and psychiatry, noting that the disorders degrade quality of life and functional ability, and recommended that when taking a patient history, specific questions are needed to probe the exact symptoms so as to enable strategic treatments. Narcolepsy and idiopathic hypersomnia are different than normal daytime sleepiness, marked by uncontrollable episodes of falling asleep during the daytime. Narcolepsy is diagnosed by the multiple sleep latency test and usually responds well to treatment. Read more HERE.



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