Changes on the Board of Trustees

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The CSF Leak Association’s 2018 AGM was held at the beginning of August. Amongst the busy schedule of business were elections for office bearers.

The Board of Trustees said goodbye (and a huge thank you) to Polly Walker, Deborah Lunnon and Deborah Ogg, all of whom stepped down for personal reasons but will continue assisting us in our work in a voluntary capacity. At the same time, we welcomed aboard Clare Sargeant, who joins us a Secretary and a Trustee.

You can read all about the governance of the charity, and the composition of both the Board of Trustees and Medical Advisory Committee under our governance section: www.csfleak.info/trustees-and-governance

Annual General Meeting 2018

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AGM Banner

The charity’s Annual General Meeting (AGM) will take place at our registered office at 7pm on 1 August 2018.

All of our members are eligible to attend in person. Members may also join the meeting as a teleconference using Skype (slots permitting – see below). Voting can be carried out in person, via Skype or by proxy.

Full details about the AGM, the agenda and background papers (including the annual report), can be downloaded by by logging into the members’ dashboard and clicking on the AGM button mid-way down the page.

Alternatively, members can request copies from secretary@csfleak.info (you must include your membership number with your request).

AGM ATTENDANCE

If you wish to attend the AGM in person, you may attend at the registered office (please contact us for details). If you wish to attend via Skype teleconference, then you must email secretary@csfleak.info no later than 7pm on 25 July 2018 in order to secure a place on the Skype call. Nine Skype slots are reserved for the existing trustees and slots for members are therefore limited to 15 callers (service status permitting); these will be allocated on a first-come-first-served basis. Details of how to dial into the meeting will be circulated to those who have booked a slot.

You must have a Skype account and up-to-date Skype software in order to attend online; meeting these requirements will be the responsibility of the member and the AGM will not wait for members who have not joined by the given time. The Skype call will start no later than 6.55pm on the 1 August 2018 to ensure all members are dialled in. Any member not online by 7pm will be deemed not to have attended. The Association can take no responsibility for Members’ own technical problems.

AGM PROXY VOTING

For members who are unable to attend in person or online, proxy voting is also available. This must be arranged in advance in accordance with the guidelines outlined in our Decision-Making Protocol, which is available to download from the members’ library. Members wishing to use a proxy vote must complete the official proxy vote form in full and return it to us within the prescribed timescales. The proxy form itself can be downloaded by clicking here, while copies of both the protocol and proxy form can be downloaded from the members’ library or are available on request.

Leak Week 2018 Survey

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Have your say-01
Leak Week UK took place in the first week of March 2018. We spent the week raising awareness of CSF leaks, sharing stories presented by sufferers themselves and publishing new material.

We’re an organisation run by CSF leak sufferers for CSF leak sufferers, and we’re always keen to improve on what we do and to get your feedback. We’ve prepared this short survey and we’d love it if you would let us know how you felt it went, what you liked and what you feel we could do better next time:

Please click on this link to take part in the survey: www.smartsurvey.co.uk/s/4PQ6H

Thank you!

Post-Epidural Blood Patch Precautions Guidance

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During Leak Week UK 2018, we published brand new guidance on sensible precautions to take after an epidural blood patch.

It covers a range of key considerations for things to avoid or consider if you’ve recently had an epidural blood patch to resolve a spinal CSF leak.

Whilst this guidance has been produced in consultation with UK neurologists, as always, we would strongly encourage you to seek and follow advice from your own doctor.

You can download your copy of the leaflet by clicking here.

Post-Epidural Blood Patch Precautions Guidance

New Spinal CSF Leak Imaging Factsheet

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Quick Reference Guide to Spinal CSF Leak Imaging Techniques

We we delighted to have been able to release our brand new factsheet on imaging techniques to coincide with both Day Three of Leak Week UK and global Rare Disease Day 2018.

The guidance provides a brief overview to most of the common imaging techniques that diagnosed or suspected spinal CSF leak sufferers will encounter on their diagnostic and treatment journeys.

It was prepared with significant professional input and should answer many of the common questions that patients have about the different scans that they’re put forward for.

You can download your own copy of the publication by clicking here.

 

Blue Kelpies for Leak Week UK

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Our special thanks go to Scottish Canals for supporting this year’s Leak Week UK by lighting up the wonderful Kelpies for CSF leak awareness.

Thank also to everyone one braved the plummeting temperatures to attend and pose for this fabulous photograph [credit: Ray Michael].

You can read more about Leak Week UK 2018 here: www.csfleak.info/leakweek2018

Leak Week UK 2018: Day One

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CSF Leak Association Leak Week 2018

After many months of planning, Leak Week UK has commenced. We’ve got a bumper week of CSF leak-related activity ahead.

You can read our introduction to Leak Week here: www.csfleak.info/leakweek2018/introduction 

And catch up on everything that’s happened on Day One here: www.csfleak.info/leakweek2018/day-one

Leak Week 2018

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A WEEK OF ACTIVITIES FOCUSING ON CSF LEAKS

What to expect this year.

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

 

GET INVOLVED & PLAY A PART

Five simple ways to get involved in Leak Week

 

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Click to download a full size copy for sharing.

 

SOCIAL MEDIA

Spread the word. Raise awareness.

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.

Facebook Leak Week 2018 Profile Image

Click to download image. You can use it as a temporary profile picture in Facebook or Twitter. It’ll probably work with other social media platforms too.

 

Leak Week 2018 Featured Image Banner

Click to download image. This one is ideal for using as a Facebook profile banner.

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