LETTER TO THE KLS COMMUNITY

Dear KLS Foundation Members,

The Kleine-Levin Syndrome (KLS) Foundation has been working closely with Dr. Mignot’s lab at Stanford University in California for many years to discover the underlying causes of KLS.  Many of you have already participated in this effort by completing questionnaires and submitting blood samples and we are beginning to see the results of these efforts.  If you have already participated in this study, we truly thank you for your help.

There are several promising leads as to the underlying cause of KLS due to the years of hard work from the Stanford research team.  As a result, there are new research projects underway, each exploring different aspects of KLS.  To further these studies, we now need your help in the form of additional study material (blood samples, and throat & nasal swabs) from KLS patients and parents taken at specific times.  Although we hope that none of our patients with KLS will ever have another episode, samples collected at designated times around an episode are very valuable and very much needed.

These are the different types of samples being collected:

1) Blood samples from the same individual obtained both during and after a KLS episode

2) Cotton swabs of the throat and nose during and after a KLS episode, preferably when there are signs of a typical viral illness.

3) Blood sample taken at any time, particularly if accompanied by a blood sample from parents and family members.

To anyone who has not already participated in the Stanford research, even one blood sample taken at any time is needed and can help the genetic research study already underway.  It is infinitely more helpful if we are able to obtain a sample from each parent to go with the patient’s sample.  New blood samples are incredibly valuable to the research, and for these genetic studies, it does not matter if you have not had a KLS episode in years.

In recent years, novel genetic techniques have allowed researchers to identify new genes and new pathways in many diseases, leading toward exciting developments in treatment as well as basic understanding.  We believe that there may be some genetic factors that greatly increase the risk of developing KLS, and these new genetic techniques may finally help us gain a better understanding of the disease.  Most of these genetic studies require large numbers of patients, and our current set of samples is just at the edge of allowing us to identify such KLS susceptibility genes.  We have already identified a few potential susceptibility genes, but it is absolutely critical to increase our blood sample collection to allow us to replicate our findings.  This will give us confidence in our findings and ensure that we are following only the most solid and valid candidate genes.

Being such a rare condition, the limiting factor in KLS research has been the highly limited sample pool.  Today, this is changing. KLS awareness is rising, and more doctors are able to accurately diagnose KLS patients.  Every single patient and family member that participates in this research study is greatly helping our cause to conquer KLS.

If you are able to participate, or if you know somebody that may be interested, please contact Tom Rico at Stanford University.  Participation is simple. The lab provides all sample collection kits and return mailers.  There is no financial cost to participate, as everything is covered for the participant by Stanford University.  If you are interested in participating in the KLS Research Study, if you have questions about KLS, or if you have questions about participating, please contact Tom.  His contact information is as follows:

Tom Rico, Clinical Research Coordinator,
Center for Narcolepsy & KLS Research
Department of Psychiatry and Behavioral Sciences
Stanford University School of Medicine
701-B Welch Road, Palo Alto, CA, 94304
Tel: (650) 725-1773
Fax: (650) 725-4913

Sincerely,

Stephen Maier and Neal Farber

Co-Presidents, KLS Foundation

Written by KLS Foundation

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