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.

Medical Advisory Committee Update: March 2018

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The 20th January saw the inaugural CSF Leak Association Medical Advisory Committee meeting at the National Hospital for Neurology and Neurosurgery in London.

A group of doctors from around the UK, along with members of our Board of Trustees and our Patient Representative, met to discuss cerebrospinal fluid (CSF) leaks and to begin to work together to raise awareness and secure progress within the UK health systems.

The meeting was a culmination of almost two years of work by the CSF Leak Association and was the first time that medical professionals met around a table with the sole intention of talking about health care as it relates to this debilitating and under-diagnosed condition.

In attendance were:

  • Dr Manjit Matharu, Consultant Neurologist, NHNN, UCLH NFT
  • Mr James Walken, Consultant Neurosurgeon, Aberdeen Royal Infirmary, NHS Grampian
  • Dr Anthony Ordman, Consultant in Pain Medicine, Royal Free Hospital, Royal Free London NFT
  • Dr Changez Jadun, Consultant Neuroradiologist, Royal Stoke University Hospital, UHNM NT
  • Dr Simon Ellis, Consultant Neurologist, Royal Stoke University Hospital, UHNM NT
  • Polly Walker, Trustee, CSF Leak Association
  • Deborah Lunnon, Trustee, CSF Leak Association
  • Clare Joy, Trustee CSF Leak, Association
  • Cerian Baldwin, Trustee, CSF Leak Association
  • Sarah Mead, Patient Representative

With apologies received from:

  • David Baldwin, Chair of the CSF Leak Association
  • Dr David Butteriss, Consultant Neuroradiologist, The Newcastle-upon-Tyne Hospitals NFT, Royal Victoria Infirmary
  • Dr Brendan Davies, Consultant Neurologist, Royal Stoke University Hospital, UHNM NT
CSF Leak Association Medical Advisory Committee Members

MAC Members at the inaugural meeting in London (Jan 2018)

An overview of the CSF Leak Association’s work to date and plans for the future were shared, followed by an acceptance of the MAC Terms of Reference. Dr Manjit Matharu was elected as chair and Clare Joy was elected as Secretary.

Sarah Mead was also in attendance in her capacity as current patient representative. The remit of the patient representative is to represent the CSF Leak Association’s membership, and patients more generally, within the organisation and, in particular, on the Medical Advisory Committee.

Throughout the afternoon, encouraging and in-depth discussions took place focusing on:

  • a review of current literature and website information;
  • gap analysis of current content including specific requests for guidance resulting from patient survey;
  • the NHS Information Standard and the Association’s road to accreditation;
  • a proposed conference/symposium and patient day in the UK;
  • securing the addition of CSF leak information on the NHS Choices and NHS Inform websites;
  • guidance on creation of an approved NHS pathway for CSF leaks; and
  • an agreement of annual objectives.

Whilst realistic about the scale of the task ahead, all parties were deeply encouraged, enthusiastic and positive about the future, secure in the knowledge that a firm working relationship has now been established between the Association and the MAC. This was an historic meeting for CSF leaks in the UK.

Leak Week 2018

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Leak Week 2018 Featured Image Banner

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

 

Facebook post get invovled v1

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

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

Annual General Meeting 2017

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AGM Banner

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 secretary@csfleak.info as soon as possible if:

  • You would like to attend the meeting in person, so that we can provide directions to our registered office;
  • You would like to attend the meeting via Skype, so we can book you a slot and provide you with instructions for dialing in;
  • You wish to vote by proxy (please include a completed proxy vote form);
  • You are interested in becoming a trustee and have not already expressed an interest;
  • You wish to raise any business at the AGM.

If you encounter any issues accessing the documents or have any questions relating to the AGM, please contact us at: secretary@csfleak.info

CSF Leak Android App

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Calling all Android Mobile Phone and Tablet owners!

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.csf-leak-association-android-app-advert

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.

android-app-screenshotThe 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 webmaster@csfleak.info with your Android account email address; this will enable us to link your pin with your CSF Leak Companion App.

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

 

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