Newsletter 1 - July 2012
Welcome to the first KLS Support UK Newsletter. This is an important time for KLS Support UK as we are about to hold our first UK conference in Manchester on Wednesday 5th December.
Who we are
We would like to take this opportunity to introduce ourselves and provide you with background of how and why we set up KLS Support UK.
KLS Support UK is a small charity run by parents of children with Kleine-Levin Syndrome. We are Rick Ball (father of Louisa), Adele Clarke (mother of Lily), Caron Krieger (mother of Ben) and Annette Robinson (mother of James who designed the KLS Support UK website).
Our aims
Our aims are to provide support to families in the UK, raise awareness of KLS amongst the general public and medical professionals and support research into this rare and complex neurological disorder.
This is how we developed the support group and our aims.
1. Support
When Adele, Annette and Caron met up after connecting via Annette's Facebook site "KLS Confidants UK", it was such a relief for us to have the support of each other and to know there was someone else who understood what we had experienced during the harrowing years of battling to find a diagnosis, and indeed what we went through during our children's episodes.
We decided that we did not want any other UK family to struggle through a similar experience alone. So in 2011 we decided to set up KLS Support UK as a support group with the primary aim of offering support to families in the UK affected by KLS.
2. Raising Awareness
We soon realised that as well as offering support, KLS Support UK also had other aims to fulfil. We recognised how important it was to raise awareness amongst the general public and the medical profession to help other undiagnosed children suffering with KLS symptoms.
2.1. To the public through the media and website
It was as a direct result of reading Louisa Ball's article in the newspaper that Adele had instantly recognised the symptoms which her daughter, Lily, had suffered for years. Thanks to that article, and subsequent conversations with the Ball family, they finally found a doctor who recognised and was able to diagnose Kleine-Levin Syndrome.
So we decided to launch the KLS Support UK website in August 2011 after the airing of "The Real Sleeping Beauty" on BBC1, the documentary following Louisa's KLS story.
Since then we have tried to encourage as much media coverage as possible because whenever there is any publicity about KLS, another family without a diagnosis recognises the symptoms and contacts KLS Support UK which is able to offer support and where appropriate suggest a doctor.
We would like to take this opportunity of thanking all those families who have shared their experiences with the media and/or put their stories on our website.
2.2. To the medical profession
As KLS is such a rare disorder, there is a risk that KLS Sufferers are misdiagnosed with CF/ME, Depression, Bipolar Disorder and other illnesses. So we aim to bring KLS to the attention of as many medical professionals as possible, including GPs, Paediatricians, Neurologists, Psychiatrists, Sleep Doctors and all medical personnel who work in these fields.
To support this aim KLS Support UK took a stand at The British Sleep Society (BSS) Conference at Cambridge University in late September 2011. We talked to as many medical professionals as possible, and as a direct result of those conversations more children have been diagnosed.
We will also be taking a stand at the International Paediatric Sleep Association "IPSA" Congress in Manchester on 6th and 7th December 2012 to continue raising awareness amongst medics from all over the world.
3. Medical Research
Our final goal is to support medical research with the aim of finding the cause, treatment and ultimately a cure for KLS.
The KLS Foundation in America, with whom we are proud to collaborate, is working with leading research groups around the world. At the First International KLS Conference in California in August 2011 those researchers gathered for the first time to share their knowledge and ideas.
Keynote presentations were delivered by Dr Emmanuel Mignot (Stanford University) on the genetics of KLS and Dr Isabelle Arnulf (Pitie-Salpetriere Hospital, Paris) on the clinical picture.
To support this research we have encouraged KLS sufferers and their families to contact Professor Emmanuel Mignot's laboratory at Stanford University (current contact Mali Einen) to take part in the research.
Medical advisers
We are pleased to inform you that the following specialists have agreed to be medical advisers to KLS Support UK: Professor Paul Gringras, Dr Cathy Hill and Professor Matthew Walker.
Fundraising
In order to help us to pursue our aims, some of our UK KLS community have started thinking about fundraising and we are happy to discuss any fundraising ideas you may have. To enable us to benefit from Gift Aid we are in the process of applying to HMRC to be recognised as a charity for tax purposes.
KLS foundation
The First International KLS Conference organised by the KLS Foundation in August 2011 in California was attended by over 200 people. It was the first time families had the chance to meet together with others who understood what they were going through. They also had the opportunity to participate in sessions addressing strategies, a review of treatments and how best to care for someone in a KLS episode. Caron and Rick met at the conference and KLS Support UK invited Rick to become a Trustee. The KLS Foundation also invited Caron to become a Board member.
Public programme 5th December 2012
The International Paediatric Sleep Association (IPSA) is holding its biennial Congress for the first time in the UK. It will be held in Manchester on 6th and 7th December 2012 and is only open to medical professionals. KLS Support UK will be taking a stand at this Congress in order to raise awareness of Kleine-Levin Syndrome.
We are really excited that our Medical Advisers Professor Paul Gringras and Dr Cathy Hill have offered us the unique and exciting opportunity to organise our first KLS Support UK Conference (Public Programme) in Manchester on Wednesday afternoon 5th December, the day before the main Congress. This means that in addition to being able to meet together to support one another, we will also have the opportunity to hear presentations from world KLS experts including Dr Isabelle Arnulf and a speaker from Professor Emmanuel Mignot's lab. There will also be an opportunity to ask questions from a panel of KLS sufferers and parents and an opportunity to take part in the Stanford research.
The cost of the Public Programme is £20 per person, which is the special rate being charged by the Congress organisers, not by KLS Support UK, to cover the costs of the venue. Registration is straightforward through the Congress website and we would encourage you to register for the Public Programme as soon as possible. There is no charge for children and students.
We are very excited to have this chance for everyone to meet and listen to latest research news and we look forward to meeting as many of you as possible on 5th December. Some people have already arranged to spend Wednesday night at The Premier Inn and have requested we organise a venue for dinner. Please advise us ASAP if you would like to join us for dinner once you have registered, so we can find a suitable location. In the meantime if you have any questions please contact us through the KLS Support UK website.
Thank you for your time
Rick Ball, Adele Clarke, Caron Krieger and Annette Robinson
KLS Support UK
Trustees 2012: Rick Ball, Adele Clarke, Caron Krieger