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

Hospital Saturday Fund Grant

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hospital-saturday-fund-grant-csf-leak-associationWe are delighted to announce that we have been awarded a grant by Hospital Saturday Fund to help us develop a new website and resource hub.

The new site, which will be developed with industry partners over the coming months, will feature up-to-date tech and make access to quality information and support for CSF leak patients quicker and easier.

Special thanks of course go to the Hospital Saturday Fund, who have shown a real interest in helping us help those with cerebrospinal fluid leaks, and also to our trustees who have worked so hard on securing the funding.

#csfleak #spinalCSFleak #intracranialHypotension

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.

Annual General Meeting 2019

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This year’s CSF Leak Association AGM will be held on 6 August 2019 at 7pm (BST). The agenda will be published later this month and papers circulated to members.

The meeting will be hosted on Skype and all current members are welcome to join us. Places are limited and will be allocated on a first-come-first-served basis.

Full details to follow…

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!

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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

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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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!