Issue No.7, the 2017 winter edition of our quarterly newsletter, Leaker Life, is out now.
Download your copy here: mailing list and newsletter
CSF Leak Association wristbands are a great way to raise awareness of both cerebrospinal fluid leaks and the charity itself.
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
The CSF Leak Association’s Annual General Meeting (AGM) will be held on Tuesday 2nd May 2017 at our registered office.
All of our members are welcome to attend, either in person of via Skype (slots are limited – advanced booking required). If you unable to attend, you may opt to vote on resolutions by proxy. Instructions are provided in the proxy vote form.
An agenda, background papers and proxy voting forms for the AGM are available by clicking on the links below (login required):
Members can also download these documents and find out more information on the AGM or becoming a trustee via our online membership system (login required): www.csfleak.info/members/agm
Please email us at firstname.lastname@example.org as soon as possible if:
If you encounter any issues accessing the documents or have any questions relating to the AGM, please contact us at: email@example.com
We are delighted to announce the release of our brand new Android app for CSF leakers. It’s absolutely free and available to download from the Google Play store.
The app provides easy access to key information and resources about CSF leaks, all at the click of a button or tap on a screen!
You can access information about cranial and spinal CSF leaks, and view a list of must-read medical journal articles, all off-line; ideal for use during an appointment with your doctor or when explaining things to friends and family.
View our global map of CSF leakers and add/edit a pin for yourself, search for doctors with some CSF leak experience near you (aimed at EU residents), or bring up a copy of our medical accommodations cards whenever you need it.
The app is brand new and is being updated regularly with new content, so please make sure that you select its ‘auto update content’ setting. If you have any ideas or suggestions for the app, please drop us a line.
To get a copy of the app, search for ‘CSF Leak’ in the Google Play app store, or point your device’s browser to: www.tinyurl.com/csfleakapp
NB. If you already have a map pin on our Global CSF Leaker Map, please go to the pin via the mobile app, make a note of the number in the pop-up window (e.g. #250) and email us at firstname.lastname@example.org with your Android account email address; this will enable us to link your pin with your CSF Leak Companion App.
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) leaks, 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
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.
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
We are very pleased to announce that the CSF Leak Association, in partnership with Teemill, now has an online shop, where you can buy a range of CSF Leak Association-branded clothing and gifts.
Unlike many similar bespoke online clothing platforms, Teemill is located in the UK, printing is carried out in the UK, and items ship from the UK, all within a matter of days. Teemill also ships internationally at very reasonable rates. The quality of the garments is all very good, and production is ethical, low carbon and organic.
For every item sold, the CSF Leak Association will receive a proportion of the profit to go towards the work that we are doing to support sufferers and progress our aims. As an example, for every t-shirt sold at £19, £4.50 will come to the Association; so you help raise the profile of CSF leaks and help us fundraise at the same time!
To visit our online shop, please click on ‘shop’ in the main menu, or click here: www.csfleak.info/shop
+++ STOP PRESS +++
We are delighted to announce that today marks the establishment of the UK’s first charity dedicated to cerebrospinal fluid (CSF) leaks.
The Office of the Scottish Charity Regulator has approved our application and we are now officially – as of today’s date – a Scottish Charitable Incorporated Organisation (Registered Charity No. SC046319).
The hard work starts here, but the trustees are raring to go. The new charity’s aims and objectives will be added to the website in due course and these will at all times inform and guide the work that we do.
Over the coming weeks and months, our website, social media accounts and publications will be updated to reflect our new structure. This will take time, so for the time being, much of the content will still refer to CSFleak.info, our old informal structure.
Membership of the charity will in due course be open to all who support our aims and work, but the membership application process will not be available until we have formalised the relevant processes.
Things will take time to evolve, this is just the beginning after all, so please bear with us as things develop and grow; this is, however, an extremely exciting and important day for CSF leak sufferers across the UK.
The Board of Trustees
CSF Leak Association