CSF Leak Association Wristbands

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CSF Leak Association wristbands are a great way to raise awareness of both cerebrospinal fluid leaks and the charity itself.

CSF Leak Wrist Band

CSF Leak Association Wristband

All of our members receive a free wristband in their welcome pack when they join or renew their subscription, however we’re thrilled to now be able to offer additional wristbands for sale on their own.

Shipping is currently free for UK orders; we ship to a range of other countries for a small charge. You can buy wristbands individually or in packs of four. If you’re after more than three, packs of four offer better value.

You can purchase wristbands via our website’s shop section: www.csfleak.info/shop

Leaker Life Newsletter – Winter 2016

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Leaker Life Banner

The winter edition of our quarterly newsletter, Leaker Life, is out now.

Download your copy here: mailing list and newsletter

Cerebrospinal Fluid Leaks: An Overview

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We are delighted to announce the publication of Cerebrospinal Fluid Leaks: An Overview, the latest edition to our popular factsheet series. It is free to download from our website.

This new leaflet provides a valuable overview of cerebrospinal fluid (CSF) csf-leak-association-factsheet-series-advert-csf-leaks-an-overviewleaks, both cranial and spinal, and touches upon key signs and symptoms, diagnostic techniques and treatment options.

It has been produced in consultation with two UK neurologists working in the NHS: Dr Simon Ellis, a consultant neurologist at Royal Stoke University Hospital, and Dr Manjit Matharu, a consultant neurologist at the National Hospital for Neurology and Neurosurgery.

Cerebrospinal Fluid Leaks: An Overview is a must-read for both diagnosed sufferers and those who suspect that they may be suffering from a CSF leak. It is ideal for inclusion in leaflet displays or handing out as part of an awareness-raising event.

The leaflet also provides useful information for GPs, doctors working in emergency medicine, paramedics and other healthcare professionals who may not routinely encounter CSF leaks in their work, but nonetheless need to know what to look out for and how to treat them.

Download the leaflet here: Cerebrospinal Fluid Leaks - An Overview

CSF Leak Medical Accommodations Card

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CSF Leak Association has created a Medical Accommodations Card - Front

Our new Medical Accommodations Card

Many CSF leak sufferers will have experienced the need to sit or lie down because of their symptoms, while being in a place where sitting or lying down was not socially acceptable, allowed or provided for. Sometimes people may formally object to you lying down somewhere because your disability is invisible.

CSF Leak Association has created a Medical Accommodations Card - Reverse

CSF leak information and advice on the reverse

The CSF Leak Association has created a new Medical Accommodations Card to try to help with such situations. The card is free to download and print off. It can be folded in half and kept in your purse or wallet. CSF Leak Association members will receive a number of professionally-printed medical accommodations cards in their welcome pack.

The card explains what a CSF leak is, what symptoms you may be experiencing and your need to sit or lie down. It can be shown to any one who may not understand your need to sit or lie down and encourage them to make allowances and provide assistance.

Please feel free to use and share:  CSF Leak Medical Accommodations Card

 

Tough Mudder North West

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Frances-Kate-Tough-Mudder-2016

Frances (right) and Kate (centre) after a recent ‘warm-up’ event.

On September 11th 2016, Frances Todd and Kate Hubbard (right and centre respectively in the photograph) will be taking on the unforgiving challenge of TOUGH MUDDER North West in order to raise much needed funds, awareness and support for the CSF Leak Association.

They are embarking on this demanding obstacle course spanning 13 miles cross country, because it is a cause very close to their hearts. Kate’s Mum has suffered with a CSF Leak for the past 6 years, she has travelled to the States to receive treatment and is committed to helping others with the condition through her role on the CSF Leak Association Board of Trustees.

It’s not going to be easy for the Tough Mudders; the challenge features a mind numbing combination of new obstacles, unrelenting terrain and A LOT of mud!

You can support Frances and Kate and help them reach their fundraising target here: www.totalgiving.co.uk/mypage/csfleaktoughmudder

NB. Are you thinking of raising money for the CSF Leak Association? Why not visit our fundraising page and also drop us a line to let us know, so that we can support you and help you advertise the event.

Charity and website news

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We have been rather quiet on the website front recently as all of our efforts have been going into the establishment of a CSF Leak charity here in the UK, the broad aims and objectives of which will be to raise awareness, improve access to the correct  investigatory and treatment, and support research into csf leaks and their prevention and cure.

Trustees have bebeen identified and we hope to lodge an application with the Office of the Scottish Charity Commissioner in the coming months. Once the application process has been completed, our informal group will become a formal charity; membership will be open to anyone and fundraising will begin in order to support our work. We are all volunteers, many of whom suffer from active csf leaks, so welcome all offers of help and support.

As part of our transition to charitable status, this website will become our ‘shop front’. We will be making a few changes to facilitate this and updating/improving content. We don’t intend to make many content changes in the meantime, so please bear with us and accept our apologies for any static content, glitches etc. over the next few months.