Summer 2019

Registered Charity 1114145 www.cavernoma.org.uk Scottish Charity SC048458

In this Summer edition of our magazine we’re really pleased to share that a 2nd stage bid for research trial funding totalling £1 million has now been submitted by Professor Rustam Al-Shahi Salman for Edinburgh University.

This bid stands a strong chance of success and if approved by the National Institute for Health Research (NIHR) will give us a much better understanding of conservative versus surgical approaches to brain cavernoma. If funded we will invite CAUK members to join a Patient Advisory Panel, which will inform the development of this trial. We will also take on an independent advocate role to support members as they decide whether trial participation is right for them. This Summer also marked the award of £10k from the Big Lottery, £3k from the February Foundation and an inspiring number of £1k+ donations from members through fairs, bike rides and more!

In other news we will be seeing some changes at CAUK, including my departure as Chief Executive. I’ve loved working for CAUK and had intended to stay for many years to come. Unfortunately, due to a change in personal circumstances I have needed to seek full-time work and will be leaving on the 30th August. I’m very pleased though to share that we will be welcoming a talented interim CEO, Lynn Ladbrook, whilst we recruit for a permanent replacement. Lynn joins us from Breast Cancer UK where she was CEO for 6+ years. She will start 2nd September and her email address is Lynn@cavernoma.org.uk.

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Hello

Lynn Ladbrook

Reflecting on our staff structure we are also re-defining our Adult Advocate role as a Peer Support & Event Coordinator under-taken by Joanne Noakes and Tracey Hammond, on a job-share basis with Jo continuing her work with CaverFamilies & Tracey with CaverBuddies. They will both be working with volunteer CaverCentre Coordinators to expand the reach and frequency of our CaverCentres, and would love to hear from you if you’re interested in hosting a meet-up. http://bit.ly/CaverCentreVolunteer

We are also looking to add to our team, hiring internally from our CAUK members an Online Engagement Coordinator. If you would like to apply for this role, which is home-based and 10 hours per week, please send your CV and a 1-page cover letter to sian@cavernoma.org.uk by 9am on Monday 9th September. The job description for this role can be found by clicking http://bit.ly/JobDescriptionOEC.

Best wishes, Helen Evans, Chief Executive

Alongside this change, Dr. Ian Stuart will be taking on a new role within CAUK as he becomes our ambassador. This will be an unpaid role within the charity. We’re incredibly appreciative of Ian’s creation of CAUK and welcome his support as he kindly gifts his time to us as our ambassador.

In 2005 Ian founded CAUK determined to improve the care and support available for people with cavernoma. Set up from his bedroom and run for many years on a voluntary basis, it’s a testament to Ian’s commitment and enthusiasm that CAUK is the charity it is today with 2400+ members. On the behalf of the Board I’d like to extend my sincere thanks to Ian for all he has done to date for CAUK (Dr Caroline Seddon, Chair)

Dr Ian Stuart

My Story

Sandra

This summer Sandra under-went life-changing surgery to “get her smile back”, having suffered facial paralysis following a bleed of her cavernoma. Sandra is passionate about raising awareness of cavernoma and in July shared her story with “Woman’s Own”. You can read more by visiting: http://bit.ly/MyStorySandra

Carol

Cavernomas can be found in the spine,

as well as the brain. Little published

about spinal cavernoma. This summer

Carol helped to change that by sharing

her story of life with a C2/C3 spinal

cavernoma with Rare Disease UK. To

read more click through to:

http://bit.ly/MyStoryCarol

drugs are beneficial will only be determined in

a randomised controlled trial, of which we will

keep you posted. This essay shows the

importance of keeping data on cavernoma

patients. Angioma Alliance in the US are

building an international Registry for just this

purpose, and you can add your name by going

to https://angiomaregistry.org.

You can read Yvonne and Lottie’s essay by

going to: http://bit.ly/LancetEssay

Earlier this year we launched the “Caver-no-

more 20130” essay prize to stimulate interest

in cavernoma research. We had five excellent

essays, and the winners, judged by a panel of

consultants, were Yvonne Zuurbier and Lottie

Hickman from the University of Edinburgh.

They wrote a joint essay asking whether

blood thinning drugs were associated with an

increased risk of bleed in adults with

cavernoma. This is an important, frequently-

asked question. Their work was an analysis of

data held in a database of patients diagnosed

with cavernoma in Scotland.

The answer was that blood-thinning drugs

are not harmful, and may reduce the risk.

This is an important and reassuring finding,

and many congratulations to Yvonne and

Lottie for their contribution. Whether such

Science

Round-up

Summer is always a busy time for Cavernoma

Alliance UK and 2019 was no exception as we

hosted our 14th Annual Conference on

the 8th June. We were thrilled to have our best

turn-out yet with over 150 people present!

For those unable to attend we are in the

process of uploading the films to our YouTube

Channel. We expect these to be live by 2nd

September if not sooner. So please do check

out http://bit.ly/YouTubeCAUK.

It was also our pleasure to welcome over 80

children and their families to our

CaverFamilies Summer Residential

held in the Peak District. This event was free to

families with thanks to our generous donor

Global’s Make Some Noise. Activities included

flying drones, an escape room and even some

well-deserved pampering for the parents.

With many thanks to all our volunteers who so

kindly helped make it such a special day.

Caver Families

For enquiries and bookings Joanne@cavernoma.org.uk

2019 September 21st

Coffee Morning PORTSMOUTH

Nov 30th to Dec 1st Christmas Party DERBYSHIRE

2020 August 28th to 31st

Summer Residential PEAK DISTRICT

Training

“How to be a CaverBuddy” 14th September 2019

09:30 to 16:00, London • Good listener? • Interested in volunteering? • Spare 1 to 2 hours a month?

Come join our CaverBuddy training! It’s free with lunch provided and travel reimbursed. To find out more and sign-up: caverbuddy@cavernoma.org.uk

Events

September 2019

6th Spinal live-stream https://zoom.us/j/738558867 14th Norwich bookings via David@cavernoma.org.uk 19th Dorchester bookings via Ian@cavernoma.org.uk

2019/2020

More dates will be following soon!

Bookings now live for our 2020 Conference:

http://bit.ly/14thCAUKConference

More information www.cavernoma.org.uk/events

Support

Inform

• Leaflets Clinician approved

• Lectures Meet leading experts

• Support Line Call 01305 213 876

Connect

• One-to-one Request a Caver Buddy

• Group Join a UK wide meet-up

• Online Join our private FB Group

And if it feels right for you…

Involve

From leafleting to fundraising to buddying you can always get involved!

Up to 26 years

With thanks to Global’s we offer:

• Residentials All costs included

• Therapy Children & adults

To access FREE support

Up to 26 years Joanne@cavernoma.org.uk

Adults info@cavernoma.org.uk

Buddies caverbuddy@cavernoma.org.uk Events, leaflets & much more… www.cavernoma.org.uk

01305 213 876

Your team Caroline, Chair

Governance Chair of Trustees CEO line manager Chair@cavernoma.org.uk 01305 213876

Helen, Chief Executive

Overall management: Member support services, staff, fundraising & finance Helen@cavernoma.org.uk 07388 246 980 (24 hours pw)

Ian, Expert by Experience Coordinator

Member support & clinical engagement: Support line, research & engaging expert advice Ian@cavernoma.org.uk 07471 833 843 (17 hours pw)

Jo, Children’s Advocate

& Adult’s Advocate

Member support: Groups events, 1:1 support & online member engagement Joanne@cavernoma.org.uk 07464 213447 (28 hours pw)

Sian, Administrator

Administration: Member events, newsletters, leaflets, fundraising, & finance Sian@cavernoma.org.uk 07555 726 920 (15 hours pw)

It’s always nice to know when we get things right. We

also want to know when we get things wrong. Please tell

us if you have something to say about our services. We

can then work to improve them. Thank you.

Office Landline: 01305 213 876

This page will be updated to reflect team changes in the Winter Magazine

With thanks to our donors

Global’s Make Some Noise National Lottery Community Fund

Alice Ellen Cooper Dean Foundation The February Foundation

& our amazing community fundraisers

Registered Charity 1114145 www.cavernoma.org.uk Scottish Charity SC048458