CSF Leak Association Shop & Merchandise

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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

 

The Kilt Ride 2016

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Kilt Ride Flyer

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.

Upcoming Fundraising Events

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We’re delighted to announce that Kate Hubbard and Ray Michael are organising fundraising events for CSF Leaks.

Kate and friends are doing a gruelling Tough Mudder to raise funds for the CSF Leak Association. You can find out more information here: www.totalgiving.co.uk/mypage/csfleaktoughmudder

Ray has organised an epic motorbike tour round Scotland to raise funds and awareness for CSF leaks. You can find out more about his event here: www.facebook.com/events/177698689248034

Best of luck to all involved and many thanks for all of your hard work and support.

Charity Update: We’re now an official charity!

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+++ 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

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.

Map of CSF Leakers

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We’re pleased to annouce the publication of a new interactive map showing the location of CSF Leakers across the world.

You can access the map here: http://www.csfleak.info/interactive-global-map-of-csf-leaks

If you’re a site member, you can add your own pin here: http://www.csfleak.info/csf-leak-map-add-new-pin

If you’re not a site member, we’d really love to add a map pin for you. Please drop us a line with your leak type (e.g. spinal, cranial etc.) and your condition status (e.g. suspected leak, confirmed leak or healed leak) and we’ll get you on the map!

New Factsheet: Example Medical Report for CT Myelogram

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Our latest CSFleak.info factsheet comprises an example of a medical report for CT Myelography and epidural blood patch carried out at Duke University Hospital by Dr Linda Leithe-Gray.

The patient is a UK national who travelled to the United States for investigatory procedures not commonly available on the NHS , yet shown through research to return a comparably high level of success in locating the site of CSF leak in comparison to Radionuclide Cisternography and conventional MRI.

It is hoped that this report, which outlines the specific procedures used regularly and successfully at Duke University Hospital, may inform and support doctors in their diagnosis and treatment of CSF Leaks in the UK. Our thanks and gratitude goes to the patient for allowing us to publish this information for the benefit of others.

You can download the factsheet by clicking here.

New CSF Leak Journal Articles

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We’ve added three additional journal articles to our downloads section.

Two articles about the use of gadolinium in CSF Leak detection:

One review paper by Dr Wouter Schievink of Cedars-Sinai Hospital, California:

New CSF Leak Videos from Cedars-Sinai

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Check out the new series of CSF Leak videos, featuring Dr Wouter Schievink from Cedars-Sinai Hospital, California, one of the world’s foremost specialists in Cerebrospinal Fluid Leak diagnosis and treatment.

The videos can be found in our ‘About CSF Leaks’ section or by clicking here.

New Factsheet: CSF Leak Terminology

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We’re pleased to announce the publication our third CSFleak.info factsheet – Quick Reference Guide to CSF Leak Terminology – which can be downloaded via our downloads section or by clicking on the button below.

Our factsheets provide easy access to key facts and information; they are printable and can be taken with you when you meet with your GP. They are provided in good faith and following careful research, however they cannot be guaranteed error-free and are not a substitute for professional healthcare advice.