In Case You Missed It! – January 2022

Happy 2022! If you’ve missed any of the latest news we’ve shared through our social media this month, don’t worry! Get up to date with this edition of “In Case You Missed It!”

  • CONGRATULATIONS!: David Burley appointed as new Chair of HF’s Board of Directors.
  • THANK YOU: Your generous donations helped us exceed our end-of-year fundraising goal!
  • GREAT OPPORTUNITY: Help educate medical students about living with a rare disease.
  • SEEKING PARTICIPANTS: Two Emory University studies are actively recruiting participants in the Atlanta, GA area.
  • READ AND SHARE: “U.S. News and World Report” provides an overview of IH and treatments.

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


DAVID BURLEY APPOINTED AS NEW CHAIR OF HYPERSOMNIA FOUNDATION BOARD OF DIRECTORS

A special announcement from Diane Powell, former HF Board Chair:

I want to share with you that I will be stepping down as Board Chair of the Hypersomnia Foundation when my current term ends on January 15th. I am so pleased to announce that fellow Board Member David Burley will be taking on the position of Board Chair.

David and I have been working together to ensure a smooth transition, and I know that HF could not be in better hands under his leadership! I will enthusiastically continue to support HF as a donor, as a member of the sleep community, and as a volunteer. The need for more IH research and more treatment options is personal to my family. HF has my support because I know how hard everyone on the team works to meet those needs, every day.

I want to thank everyone who has been so supportive of HF, and of my efforts, over the last six years. It’s been a privilege to work with you all and a tremendous experience.

Warmly, Diane

Read more about David and the Hypersomnia Foundation Leadership team.


YOUR GENEROUS DONATIONS HELPED US EXCEED OUR END-OF-YEAR FUNDRAISING GOAL!

YOU DID IT! Your generosity raised $40,943! YOU got us #BeyondSleepy and WE THANK YOU! Many thanks to Tony and Bertha Rye for their generous $15,000 matching gift!

Thanks to YOU, we enter 2022 with the support needed to continue our mission to engage, inform, and champion our global community to improve the lives of people with idiopathic hypersomnia and related sleep disorders.

We are grateful for your support and wish everyone a safe and peaceful 2022!


HELP EDUCATE MEDICAL STUDENTS ABOUT LIVING WITH A RARE DISEASE

The Global Genes RARE Compassion Program is an opportunity for individuals or families living with a rare disease to develop relationships with medical students with the goal of fostering compassion and awareness for the challenges that patients diagnosed with a rare disease are faced with every day.

Visit the Global Genes’ website for more information and to register for the RARE Compassion Program. Applications are being accepted through February 25th.

As an individual or family participating in the RARE Compassion Program you will have the opportunity to educate future medical professionals about the unique needs and challenges presented by living with a rare disease. Through the program, you will build meaningful connections with medical students helping them to better advocate for and recognize patients living with a complex rare condition. In return, you will develop a greater understanding of the medical system and improve your storytelling to enable better communication with your doctors and other medical professionals.


NOW RECRUITING – TWO EMORY UNIVERSITY STUDIES ARE ACTIVELY RECRUITING PARTICIPANTS  

Control Subjects Without Diagnosed Sleep Disorders Needed for Hypersomnias Study

Please recruit your Atlanta-area friends and family who are normal sleepers ages 18 – 45! They’ll get paid to help Dr. Trotti’s research team as control subjects for their ongoing study of Hypersomnias and the Microbiome (investigating how the microorganisms in the gut might affect sleepiness). Participation involves a visit to the Sleep Center (12 Executive Park, Atlanta, GA, 30329) for questionnaires and a blood draw, and collecting a stool sample at home to bring back to the Sleep Center. Total time is estimated at 1 hour.

If you are interested in participating and are a good sleeper without any diagnosed sleep disorders, please contact Natalie Fernandez (404-778-6114 or ) or Dr. Trotti (). For more information, visit “Currently Recruiting Research Studies.”

 

Adults Age 18–45 With IH and Narcolepsy Type 2 Needed for Research Study

Now recruiting adults age 18–45 with IH and narcolepsy type 2 for a research study at Emory University in Atlanta.

The purpose of this study is to evaluate a medication called clarithromycin for treating sleepiness in two related conditions, narcolepsy without cataplexy and idiopathic hypersomnia. Studies have shown that clarithromycin can reduce sleepiness, but researchers do not know how clarithromycin does this. This study will look at brain activity (on magnetic resonance imaging [MRI] and electroencephalogram [EEG] brainwaves), inflammation, bacteria living in the gut, and cerebrospinal fluid, to better understand how clarithromycin can reduce sleepiness. This study will recruit 92 participants who will be randomized to receive clarithromycin or a placebo for 14 days.

For more information, visit “Currently Recruiting Research Studies.” You can also read more about this study HERE.


U.S. NEWS AND WORLD REPORT PROVIDES AN OVERVIEW OF IH AND TREATMENTS

A recent article written by Dr. Nancy Foldvary-Schaefer for “U.S. News and World Report,” gives a great overview of idiopathic hypersomnia and current treatments. For friends and family who might not understand IH, send them this article and let’s work together spreading awareness and educating others about IH—a rarely diagnosed and often overlooked sleep disorder.

 

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