CSF Leaks at the London Marathon 2020

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CSF Leaks at the London Marathon 2020We are absolutely thrilled to announce that the CSF Leak Association has been allocated a place and will be running the world famous London Marathon in 2020.

This is a wonderful opportunity at a global event to bring attention to cerebrospinal fluid leaks, focus the spotlight on our cause and raise much-needed funds.

Representing us on this challenge will be seasoned runner, Claire Secker, whose husband, Russell, experienced a CSF leak in 2019. Both he and Claire have got stuck in with the charity and are determined to use their experiences and skills to help others.

Claire Secker is running the London Marathon 2020 for the CSF Leak Association

Claire Secker is running the London Marathon 2020 for the CSF Leak Association

Here’s Russell talking a little about his journey:

“Prior to May 2019, I was suffering from a severe CSF Leak. I developed frontotemporal dementia, and was descending into madness. My wife Claire cared for me as I became less and less able to function, advocated for me to the medical profession, and found a brilliant neurosurgeon in Los Angeles who operated on my spine and fixed my leak. Dr Schievink And his team saved my life.

When we had our discharge meeting with Dr Schievink a week after my surgery in May 2019, he told us that most CSF Leak “survivors” don’t stay involved with the leaker community once their illness has been fixed. We both told him that going forward we wanted to help to support sufferers and help to educate the medical profession in the UK.”

This is a wonderful opportunity for the CSF leak community and we’re determined to capitalise on it to the max. Please help us to raise awareness of CSF leaks and spread the word by supporting Claire today.

We hope that you will tell all of your friends and family and share the fundraising page far and wide. Whilst daily living is a marathon in itself for a great many CSF leak sufferers, we can be there in spirit with Claire, willing her along!

Send Claire and Russell a message of support, spread the word and help raise vital funds for CSF leaks here: https://uk.virginmoneygiving.com/ClaireSecker1

London Marathon Route Map

#CSFleaks #SpinalCSFleak #IntracranialHypotension #LondonMarathon #LondonMarathon2020

Calling all Junior Doctors: Intracranial Hypotension Symposium 2020 Attendance Bursary

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The CSF Leak Association is delighted to be able to offer a bursary to support a UK-based junior doctor to travel to, and attend, the 3rd annual Intracranial Hypotension Symposium on 8th February 2020 in Los Angeles.

3rd-Annual-Spontaneous-Intracranial-Hypotension-Symposium-2020The symposium is organised by the US-based Spinal CSF Leak Foundation in partnership with Cedars-Sinai Medical Centre Department of Neurosurgery, and attracts experts and interested professionals from around the world.

The 2018 symposium saw speakers attend from Europe, Australia, Canada and the United States. You can read about last year’s event here. Presentations from past events are also available online: 2018 symposium and 2017 symposium.

Full information about the bursary and the online application form can be found here: www.csfleak.info/bursaries/intracranial-hypotension-symposium-2020

Download the PDF information pack here: www.csfleak.info/IHS2020-Infopack

Annual General Meeting 2019 (Agenda & Papers)

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The CSF Leak Association annual general meeting (AGM) will take place at 7pm (BST) on 6 August 2019 in Strathpeffer. The meeting will be hosted on Skype.

All current members of the charity may attend in person, dial in or vote by proxy. For those living locally, spaces will be available at the registered office, and for those further afield, limited first-come-first-served places will be available on the Skype call.

The business of the meeting will include elections to the Board of Trustees and consideration of the annual report, annual accounts and proposed changes to the constitution.

Links to the agenda, papers pack (which includes the annual report and accounts, proposed changes to the constitution, trustee biographies etc.) and a proxy voting form have been distributed to members.

If you have not received or have mislaid the email or would prefer to receive a copy by post, please contact us and we’ll be happy to reissue the papers to you.

To book a place in person or on the Skype call, please email contact us no latter that 1 August 2019. Places will be issued on a first-come-first-served basis.

If you would like to vote on an agenda item by proxy, please download and complete a proxy voting form and return it to us no less than 48 hours prior to the AGM (7pm on Sunday 4 August) to allow time for it to be processed.

If you have any questions or queries about the AGM or the work of the charity more generally, please feel to contact us and we’ll be happy to help.

CSF Leak Association Christmas eCards 2018

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We’ve teamed up with DontSendMeACard.com so that you can send festive e-cards this December and donate the equivalent cost of Christmas cards to charity.

It’s much easier and quicker than sending conventional cards, it helps to raise awareness of CSF leaks and it supports the charity too…and if you’re a UK taxpayer, you can even use Gift Aid!

csf leak association christmas card 2018

Click here to send a card today: www.dontsendmeacard.com/ecard/kHKC

You can choose a generic card with a traditional festive greeting or select one of four special Scandinavian-themed CSF Leak Association Christmas cards, based on original photographs taken by charity member and CSF leaker, Kariina Pirhonen.

#CSFleak #SpinalCSFleak #DontSendMeAcard #Christmas

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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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

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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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