In Case You Missed It! – February/March 2023

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

  • Project Sleep is seeking Black American adults with sleep disorders for an upcoming research study.
  • Applications are now open for the EveryLife Foundation for Rare Diseases #RAREis Scholarship Fund.
  • HF’s CEO, Claire Wylds-Wright, participated in an #IHaveIH LinkedIn Live event panel discussion.

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

Project Sleep seeking Black American adults with sleep disorders for an upcoming research  study

Project Sleep is seeking participants for an upcoming sleep research study. They are looking for Black American adults, healthcare providers, and community leaders to share first-hand perspectives on sleep and sleep disorders. This project aims to uncover important insights that will inform future sleep awareness and education campaigns to reduce delays to diagnosis and treatment of sleep disorders in Black American communities.

Individuals will participate in 90-minute online focus groups, moderated by sleep researchers Dr. Robert W. Turner II and Dr. Michael Grandner. If you are selected to participate, you will receive a $100 Amazon gift card upon completion.

For more information, visit the Project Sleep website.

Applications are now open for the EveryLife Foundation for Rare Diseases #RAREis Scholarship Fund

The EveryLife Foundation for Rare Diseases #RAREis Scholarship Fund is dedicated to enriching the lives of adults living with rare diseases by providing support for their educational pursuits. The EveryLife Foundation for Rare Diseases will provide one-time awards of $5,000 scholarships to 70 rare disease recipients in for the Fall 2023 semester.

The #RAREis Scholarship is available to applicants who are:

  • Ages 17 or older.
  • Residents of the United States.
  • Diagnosed by a physician as having any form of rare disease regardless of treatment status. Undiagnosed patients are also encouraged to apply.
  • Must be planning to enroll full-time or part-time in undergraduate or graduate study at an accredited two- or four-year college, university, or vocational-technical/trade school for the Fall 2023 semester. There is no minimum amount of credit hours to be part-time.

The scholarship application is open March 8 through April 13. For more information and to apply, visit the EveryLife Foundation website.

HF’s CEO, Claire Wylds-Wright, participated in an #IHaveIH LinkedIn Live event panel discussion

Hypersomnia Foundation’s Chief Executive Officer, Claire Wylds-Wright, participated in a panel discussion for an #IHaveIH LinkedIn Live event on hosted by Jazz Pharmaceuticals.

The panel was moderated by Kelvin Tan, MB BCh, MRCPCH, Senior Vice President, Chief Medical Officer at Jazz Pharmaceuticals, and also included panelist Victoria Kirby York, a community advocate and person living with idiopathic hypersomnia.

The #IHaveIH panel discussion featured perspectives from across the community on what it’s like to live with and manage idiopathic hypersomnia, as well as important resources available to patients.

The Hypersomnia Foundation is proud to partner with Jazz Pharmaceuticals for “I Have IH,” a disease awareness campaign aimed to increase understanding of idiopathic hypersomnia  and empower patients to recognize their symptoms and improve conversations with their care teams.

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