We’re delighted to announce that we now have our own Instagram account to compliment our exiting active and popular Facebook and Twitter social media streams.
You can follow us on Instagram here: www.instagram.com/csfleakassociation
With a little under three weeks to go, we wanted to tell you all a little bit more about what we have planned for Leak Week UK 2018.
While we don’t want to spoil the surprise and reveal everything in advance, look out for an active week on social media, brimming with facts, information and new resources. You’ll hear from a few new faces, and some old ones too!
As we’re an open organisation run by CSF leak sufferers for CSF leak sufferers, we’ll be announcing new ways to get involved and participate in the work that we’re doing. We’ll be providing an update on recent exciting progress made with our brand new Medical Advisory Committee. And much more.
We’re really excited about this year’s Leak Week. There’s going to be a lot going on from our side, but more than anything, we’d love to have you involved and helping raise awareness of cerebrospinal fluid leaks.
We appreciate that not everyone has the time or ability to help out regularly, but every little really does help and, collaboratively, we can made a huge difference.
Leak Week UK also coincides with global Rare Disease Day and, being a member of Rare Disease UK, we’ll also be linking in with a number of wider initiatives aimed at furthering awareness and care for all rare disease sufferers across the country.
You can keep up-to-date on what we’re up to during Leak Week at our main Leak Week 2018 webpage here: www.csfleak.info/leakweek2018
If you’ve got a Facebook, Twitter or Instagram account, why not use the graphics below for your profile and banner images for the duration of Leak Week? It’s a great way to spread awareness and get the message across. Facebook shows you how to do that here.
If you’re posting and sharing on social media in the run up to and during Leak Week, be sure to use the following hashtags to help the message spread:
#LeakWeek #CSFleak #RareDiseaseDay
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
We’re thrilled to announce the publication of our latest infographic: Upright Headache? Think CSF Leak!
The publication, produced in consultation with NHS neurologists Dr Simon Ellis and Dr Manjit Matharu, is designed to be printed off at both A3 and A4 size; it is ideal for use as a leaflet or poster, which can easily be passed on to friends and family, or given to your GP or other healthcare provider to display in their surgery or office.
Printed copies will be included in our members’ welcome pack from late June 2017 onward. You can download the infographic in PDF format for printing at home by clicking here.
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 email@example.com with your Android account email address; this will enable us to link your pin with your CSF Leak Companion App.
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
The time has flown by and the Kilt Ride 2016 – the world’s first ever large-scale awareness and fundraising event for cerebrospinal fluid (CSF) leaks – is almost upon us. This fantastic two-day event, organised by Ray Michael for Saturday 28th and Sunday 29th May 2016, will see up to 100 tartan-clad bikers travel around Scotland, from the Borders to the Highlands, in support of CSF leaks.
The convoy will depart the Leadburn Inn, Midlothian, at 09:00 to the sound of bagpipes and the taste of bacon butties, making its way to the second rendezvous point at Tesco Extra Perth, Edinburgh Road for 11:30. Thereafter, it will make its way through Fife, Perthshire through the Spittal of Glensheeand and into the Cairngorms. The overnight stop will be at Dores, on the banks of Loch Ness, before travelling back south the following day, via Glen Coe and Bannockburn.
We are sure that the event will be a roaring success and would like to thank Ray for his dedication and support, and for all of the hard work that he has put in over the past 6 months to make it a reality. We would also like to thank The Dores Inn, the Leadburn Inn, Saltire Motorcycles and Alba Customs for supporting the event. Event t-shirts and raffle tickets (with some fantastic biker-related prizes) will be available to buy at the Dores Inn on the Saturday evening.
If you would like to view more information on the event itself, please visit the dedicated Facebook page.
If you would like to support the event with a donation, you can do so via the event page, by visiting our donations portal on TotalGiving or, if you have a UK mobile phone, by texting: LEAK00 £5 to 70070.
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.