Hypersomnia Foundation--Awareness and Education

by Hypersomnia Foundation, Inc. Vetted since 2015

Summary

The effects of Idiopathic Hypersomnia (IH), a rare, chronic, neurological disorder, leave one with an insatiable need to sleep, along with other symptoms such as sleep inertia and sleep drunkenness. The relentless nature of the disorder negatively impacts mental and physical tasks, including holding a job, going to school, and maintaining relationships. The HF is dedicated to increasing awareness of this disorder, and to finding more effective treatments (and, hopefully, someday a cure).

$75,000
total goal
$71,297
remaining
41
donors
1
monthly donor
2
years

Challenge

Idiopathic hypersomnia is a rare sleep disorder about which little is known. There exists a need to educate both the pubic and the medical community about its characteristics, so patients can be diagnosed more quickly. (Currently there is, on average, a 7-year gap from initial symptoms to correct diagnosis.) Further, many primary care physicians and other doctors have not heard of this disorder, so one goal is to increase awareness within the medical community itself.

Solution

Increasing awareness of idiopathic hypersomnia (IH) in both the public and the medical communities will reduce the time that patients suffer with IH without a proper diagnosis. In addition, increasing awareness will result in a more accurate count of persons with IH, which will, in turn, spur researchers and pharmaceutical companies to learn more about the causes of IH and to develop better diagnostic tools and treatments (presently there is no FDA approved treatment for IH).

Long-Term Impact

Improved awareness of IH is essential in changing the time from onset to a proper diagnosis, as well as encouraging researchers and pharmaceutical companies in developing more effective diagnostic tools and treatments.

Additional Documentation

This project has provided additional documentation in a PDF file (projdoc.pdf).

Resources

http:/​/​www.hypersomniafoundation.org
The Way Forward-#BeyondSleepy in Baltimore (2018)
What is idiopathic hypersomnia?
Vetted brochure about idiopathic hypersomnia
Join the patient registry; solve the puzzle

Organization Information

Hypersomnia Foundation, Inc.

Location: Atlanta, GA - USA
Website: http:/​/​www.hypersomniafoundation.org
Facebook: Facebook Page
Twitter: @HypersomniaNews
Project Leader:
Catherine Page-Rye
Mailing Address
Atlanta, GA United States

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