They are also calling it Kleine-Levin Syndrome and a foundation has been developed for the study of it.
That address is
http://www.klsfoundation.org/site/kls/
They are currently looking for KLS volunteers:
IMPORTANT NEW KLS RESEARCH STUDY - VOLUNTEERS NEEDED
An important new KLS research study is being conducted to investigate a possible viral involvement in KLS. The KLS Foundation is assisting by identifying volunteers for this study. We are looking for active cases of KLS that are preceded by flu-like symptoms or an upper respiratory illness.
You will be asked to obtain a nasal sample with a sterile cotton swab immediately before or at the beginning of a suspected or actual KLS episode. The cotton swab is then shipped to the lab at Stanford University. Cotton swabs, shipping vial and container will be provided ahead of time to participating families.
This is an important study that requires samples to be collected from a number of individuals with KLS. If your KLS is active with frequent episodes and you are willing to participate in this study or have any questions, please contact the Foundation at
facts@klsfoundation.org or Neal Farber, PhD at
KLSResearch2@aol.com.