Welcome to Narcolepsy UK
Scottish networking meeting to be held on Sunday 16th June
The venue and date for the first network meeting in Scotland has been confirmed. The venue is The Roxburghe Hotel in Edinburgh on Sunday 16th June 2013 at 2pm -4.30pm. Our Scottish representative Margaret Roxburgh is coordinating the event and can provide more information. Click here to email Margaret.
It will be a fantastic opportunity to meet up with others, in a great location. We are very keen to welcome children with narcolepsy as it will enable them, often for the first time to meet up with other children with the condition and hopefully real friendships can be established.
The venue is a 2 minute walk from Princes Street and a 5 min walk from Haymarket train station. There is off street parking available all day. We would be grateful if you could let us know if you are planning on coming along (email email@example.com or tel 08454 500394). Note that we need to confirm numbers for refreshments by 30th May.
Well done Jayne!
Congratulations to Jayne Collins for running the London Marathon in aid of Narcolepsy UK. Jayne completed the course in just over 4 hours and 30 minutes which means, if my maths is any good, that she was running 12 minute miles every mile throughout the 26 mile course.
Narcolepsy UK has been asked if the MMR vaccination can cause narcolepsy to develop or to make narcolepsy worse in children. Obviously many families are concerned about vaccination after the Pandemrix H1N1 situation and the recent publication of data confirming a statistical link. Add to that the perceived problems with the safety of MMR and we can understand why families want further information.
Latest developments on the relationship between orexin, the circadian rhythm and body weight
While not related directly to narcolepsy, two interesting papers published last month do show how problematic weight gain and loss can be in an individual with narcolepsy.
The beginning of the end of the Pandemrix story?
We though the recent Health Protection Agency's report on Pandemrix-associated narcolepsy would drawn a line under the arguments about causality. However, the issue still rumbles on.
Decision making and addictive behaviours in people with narcolepsy
Another small reason why having narcolepsy is so difficult, not only for you but family and friends.
Association between Pandemrix vaccination and narcolepsy in England
A recent paper suggests that an association between vaccination with Pandemrix and childhood narcolepsy exists in England. The risk is similar to that previously reported in Sweden and Finland.
Hypocretin falls as narcolepsy develops
It is now accepted that many people with narcolepsy and cataplexy have low hypocretin (orexin) levels in their brain. A recent paper has shown that these levels fall at the same time as the patient develops narcolepsy.
Read More >>
Information on familial narcolepsy in the media
A national newspaper has reported on the work carried out to identify the causes of narcolepsy in 12 members of a large family.
Growing evidence of Pandemrix link to Narcolepsy
Article published by Reuters on 22nd January, citing growing evidence for the Narcolepsy link to the GSK swine flu vaccine.
More Pandemrix News
Three papers published in the last three months throw a different light on the whole Pandemrix story.
Read More >>
International Paediatric Sleep Association conference
A number of members including many new ones attended the public session of this major International Conference held in Manchester in early December.
Read more about the conference >>
A Really Useful Donation
It is amazing where an opportunity for donations to the charity appears; who would have thought that a visit to a West End theatre would end up with asizable gift to Narcolepsy UK?
Read More >>
Support from the Worshipful Company of Actuaries
We are delighted to inform members that the Worshipful Company of Actuaries have awarded a three year grant to Narcolepsy UK to support its charitableactivities. In particular the grant will be used to support meetings and conferences.
Read more about their support>>
Narcolepsy UK welcomes findings of UK Pandemrix report
A recently published report confirms that there is an association in the UK between the Pandemrix H1N1 Vacinne, with the AS03 adjuvant and increased risk of onset of narcolepsy in children. This is in line with similar published findings in Finland and Sweden.
Bill Harris, Chairman at Narcolepsy UK said; “This report is a major step towards linking the Pandemrix vaccine with narcolepsy. Narcolepsy UK's primary aim is to help and support the families affected by this, particularly in the first years after diagnosis. The charity is providing information, contacting other families in similar circumstances and helping to ensure that the children have access to as much support as possible.
People with narcolepsy and children in particular face huge challenges at home, in education and potentially later in the workplace. The charity is working with a number of families to help them determine the best ways to manage this intrusive and life changing condition. For many families, getting the best care for their children is a significant challenge especially when confronted by wide ranging ignorance of this neurological condition, its causes and effects. Some parents may also be dealing with anger and guilt connected to the belief that they may have contributed in some way to causing their child's distressing condition. For others, simply trying to understand the cause of their child's narcolepsy has been their preoccupation. In some cases seeking appropriate compensation has been a major concern."
Bill Harris, chairman continues; “This report will be seen by most of those affected as a vindication of their beliefs and will open the doors for them to move on and progress. Narcolepsy UK welcomes the report and hopes that it will help focus attention on the very real issues of getting the support, understanding and services that those who so urgently need it.”
Click here to read the full report on the British Medical Journal website.
Future book on narcolepsy - request for help.
A distinguished scientific author - who incidentally, has narcolepsy - is writing a book on the condition. He is very interested in obtaining information on patients' experience with narcolepsy.
Here is what he has to say.
"Over the last few years, I’ve been running a simple quasi-experiment, dropping the fact that I suffer from narcolepsy into conservation and gauging the reaction. I’ve been encouraged to find that most people have now heard of the condition and are keen to learn more. But it’s also true that the widespread perception is that narcoleptics only suffer from excessive sleepiness. Very few, if any, people know about those other symptoms, notably cataplexy, sleep paralysis and lucid dreams that many of us experience. I am writing a memoir-style book on narcolepsy, in which I hope to capture the rich, near-infinite variation in this strange, debilitating disorder and I need your help. I would like to hear from anyone prepared to share their experience of narcolepsy. How long did it take to get diagnosed? What treatment works for you? How has narcolepsy affected your career? What’s the most terrifying hypnagogic hallucination you can remember? How about your most creative, vivid dream?
Please email Narcolepsy UK’s help desk with your contact details and I’ll get back to you."
Can you help your Charity?
You will have read about how Narcolepsy UK received a grant from a livery company. We received this grant because our Chairman went direct to the Company and asked for it. If you are a member of a livery company - or know someone who is - then please let us know and we'll help you apply for a grant.If you know people at a Grant Giving Trust or work for a company that match funds charity events do let us know. This really is a case where a couple of emails can raise significant funds for NUK. We need these funds in order to ensure we can maintain the level of service we provide to narcolepsy sufferers.
An exciting new way to support Narcolepsy UK
The Board of Trustees have been investigating alternative ways of funding Narcolepsy UK in an economic environment that impacts us all.
The charity would like to do more for you. You can help make new ideas become a reality by adopting some of the fundraising initiatives that are currently new to us all.
Give as you Live is the first of several ways to fundraise for Narcolepsy UK that we would encourage you and your family and friends to use. Together we can beat the challenging economic situation and provide a regular income, to maintain and grow Narcolepsy UK.
Please keep an eye open for more news on other exciting initiatives, including an on-line greetings card shop and approaching your employer about Give As You Earn Schemes.
Read more about Give as you Live>>
Charity Greeting Cards
It is now possible to purchase Narcolepsy UK branded greeting cards online. Please visit our shop!
Read more here >>
One of our members has written to thank Margaret Roxborough, who runs our help desk, for the fantastic support given recently. The member says:
I really appreciate all the support and advice you and Narcolepsy UK have given me over the past few months. I do not know how I would have been able to get through these very difficult times without your invaluable help.
You were supporting me all the way: from the terrible struggles of trying to get a diagnosis to the very bad side-effects on the beginning of the treatment.
Being able to speak to someone who understood first hand what I was and still am going through, get so many positive words and priceless advice has given me hope for the future.
..it was wonderful to be able to speak to people that really understood what I was going through. You gave me strength and hope when I thought I could not carry on anymore.
Incidentally, Margaret was also responsible for producing a successful application for Disability Living Allowance for the same (delighted!) member.
We join with this member in thanking Margaret for her superb assistance to our members
A big thank you to all helpers
This year has seen some major help from members of the society in raising both funds and awareness for Narcolepsy UK. We have had three people running in marathons, one building computers to auction and another jumping out of an aeroplane. There was a group that doing the Thames Pathway Challenge and another who walked the Ridgeway and all we can say is thank you very much for your help and support. The money is always useful but so is raising the awareness of narcolepsy to the general public and events like this certainly do that.
If you would like to challenge yourself and raise awareness of narcolepsy as well as making some much needed money for the charity please do let us know. We are happy to help and can provide support, publicity and some material to help you on your way. Just contact firstname.lastname@example.org for more information. Together we can make a difference.