KLS Support UK - Helping families affected by Kleine-Levin Syndrome

The Genome Project

An email was sent on January 15th 2014 to those in the UK who have requested updates from KLS Support UK. If you requested to be kept updated and have not received an email it may be because KLS Support UK have the wrong email address, please let us know through the Contact Us form. Thank you.

From KLS Support UK, 15 Jan 2014

--Thank you to all those of you who have expressed interest in taking part in the Genome Project to help in the research on KLS. We are pleased to confirm that this is now going ahead through GP surgeries.

We have been advised by Professor Houlden that the criteria for taking part are now as follows (there is one change from the earlier e-mail) :

  1. Blood sample required from the person with a diagnosis of KLS and
  2. Blood sample required from both natural parents or where both parents are not able to give blood samples then blood samples from one parent and one unaffected sibling in their 20s .

If you would like to take part please contact Henry Houlden directly by e-mail as soon as possible. (please Contact KLS Support UK through the website for this information, thanks). Please head your e-mail KLS and the Genome Project. Please include the full postal address of the person with KLS and the full postal address (if different) of parents and/or sibling providing blood samples.

Professor Houlden will then send out:
1. A blood pack
2. A letter to your GP requesting help in taking blood
3. A questionnaire to help with diagnosis (blood samples cannot be used without completion of this questionnaire)
4. Consent forms (sample consent forms used in other research are available from KLS Support UK and were attached to the original email. The correct consent forms, which we have not seen, will be sent with the blood packs)

We know that some of you have already kindly donated blood samples to the Stanford research and completed questionnaires but these unfortunately cannot be used for this research.

If you have any queries about participating in the Genome Project, Professor Houlden is happy to answer your queries by e-mail or in person at his clinic in London.

We would like to take this opportunity of thanking both Professor Henry Houlden and Professor Matthew Walker for including KLS in this research and all of you who choose to participate.

Best wishes

Adele Clarke, Caron Krieger, Beverley Hunt and Annette Robinson
KLS Support UK

NIHR BioResource

There is also the opportunity to take part in the NIHR Bioresource research. The NHIR information Leaflet and The NHIR Participant Information Sheet are available here

Research Request from Stanford, USA

For information on the grant by the KLS Foundation and Stanford research, click here.

Here is a message from the Researchers:
We are reaching out with a plea to the KLS families who attended the 2015 KLS Conference in Atlanta and those families engaged on the KLS Facebook page. We need all individuals diagnosed with KLS who have not given a blood sample to please contact the KLS research lab at Stanford University about giving blood to further KLS research. As reported at the conference, Dr. Mignot at Stanford has exciting new genetic findings. These tentative results need to be replicated. The limiting need is for additional blood samples from individuals with KLS who have not yet participated.

If you have already given a blood sample, you can ignore this message. But if you have not given a blood sample, it is so very important to do so to further the research into KLS. When you contact the Stanford University KLS Study at the address below, you will be mailed a blood sample kit. You can take it to your doctor to get a small blood sample drawn. There will be a prepaid return envelope/box for the samples.

We will never find the cause or a cure for KLS if we do not all participate in all studies on KLS. Again, please take the time to do this.

Ling Lin, MD
Stanford Sleep Center
3165 Porter Drive
Palo Alto, CA 94304