Hypersomnia Foundation; Awareness and Research

by Hypersomnia Foundation, Inc.
Vetted

Summary

The effects of IH, a rare, chronic, neurological disorder, leaves one with an insatiable need to sleep including sleep inertia or sleep drunkenness. The relentless nature of the disorder negatively impacts mental and physical tasks making it extremely difficult hold down jobs, remain in school, maintain marriages, and fully engage with family and friends. The Scientific Advisory Board of the HF is creating a research program that will financially support innovative research about hypersomnia.
$25,000.00
total goal
$23,715.00
remaining
6
donors
0
monthly donors
1
year active

Challenge

There exists an unmet clinical need for people with idiopathic hypersomnia, thus research is critical because: *The prevalence of people with IH is unknown. A vital number encourages scientists to apply for grants and pharmaceutical companies to study IH. *No biomarker, a substance in the body, such as blood or spinal fluid, exists that can definitively tell if a person has IH. *The tests that we do have are often inaccurate, and repeating them is expensive. *No FDA approved treatments exist.

Solution

Building and implementing a research program to financially support innovative research applications will most likely positively impact the hypersomnia community. Announcement of this program to the scientific community will depend upon having funds in hand sufficient to attract the best science, as well as sustain this initiative.

Long-Term Impact

Improved scientific understanding about hypersomnia is essential in changing the time from onset to a proper diagnosis, as well as assist in securing novel treatments.

Additional Documentation

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

Resources

http:/​/​www.hypersomniafoundation.org
Idiopathic Hypersomnia
Hypersomnia Foundation Scientific Advisory Board
Dr. Dale Edgar joins the HF SAB
2016 Giving Season for research

Organization Information

Hypersomnia Foundation, Inc.

Location: Sugar Hill, GA - USA
Website: http:/​/​www.hypersomniafoundation.org
Project Leader:
Catherine Page-Rye
Sugar Hill, GA United States

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