Archive | Events

CAUK UK Summer Party 2018

You are cordially invited to


Saturday 28th July: 6-9 pm

Hurcott Hall, Worcestershire,  DY10 3PH

We know you’ve all been requesting a CAUK informal members get-together/celebration, and we’ve listened! We’d like to invite you to CAUK’s first Summer Party! There will be food, drink, music, and plenty of opportunity to meet with other members and talk.

We have limited placed available, so please get your RSVP in quickly.

We do have a small welfare fund available for those of you who may be struggling with finances, so you can apply for help with your travel should you need it. We will also have discounted hotel rooms locally, should anyone want to stay the night and not travel back late. Do get in touch if you’re in need of a hotel and we’ll let you know the price. We hope you’re as excited as we are! We look forward to hopefully seeing you there!


Please let us know any dietary requirements.

12th Annual CAUK International Forum 2018

The Trustees of Cavernoma Alliance UK (CAUK) are pleased to invite you to attend the 12th Annual International Forum to be held at the Nowgen Centre, Manchester on Saturday 2 June 2018, 9.15am to 5pm. This year we are particularly honoured to be working in partnership with the CAUK CaverFamilies and the Royal Manchester Children’s Hospital.

As always the Forum on Saturday will be free to all registered participants. The day begins at 9.15 with registration followed by a welcome from Ian Stuart, Founder Member and Co-ordinator. This year’s speakers will be Dr Ronan Burke, neuro-psychologist from The National Hospital for Neurology and Neurosurgery and Dr Ed Smith, The R. Michael Scott Chair in Neurosurgery, Co-Director, Cerebrovascular Surgery and Interventions Centre, Director, Paediatric Cerebrovascular Surgery, Department of Neurosurgery/Vascular Biology Program, Children’s Hospital Boston/Harvard Medical School who will speak about advances in cavernoma treatment. Following their talks will be an AGM and recognition of Dr David White’s retirement as chair of the trustees. Lunch will be served after which there will be a panel presentation by amongst others Drs Grace Vassallo, Dipak Ram, (neurologists), Stewart Rust (neuro-psychologist), Emma Dewhurst (Trainee Advanced Paediatric Nurse Practitioner for Neurosciences), Rebecca Keeping (holistic care in the community), Sofia Douzgou (geneticist) and Emma Tait (member).

A new format for 2018 will follow as the speaker’s break into a series of informal pods at specific locations throughout the Nowgen Centre in which members will be able to participate in.Tea and coffee stations will be available at each of these pods.The day will finish at 5pm.


Landscape of the Mind Art Sale

Cavernoma Alliance UK’s “Landscape of the Mind” art sale, bringing together the work of international artists of all disciplines, has been running since 12 March 2018 to coincide with Brain Awareness Week 2018. It looks to raise awareness of cavernoma, as well as funds to support members of the charity. All art work is being sold anonymously, and at a fixed price of £75 – making art affordable for everyone!

To view pieces on sale, please visit;

CAUK Forum 2017 : Art Auction

At the CAUK Forum 2017, we will be holding an Art Auction with paintings by Carolyn Nicholls.

Without further ado, the paintings and auction in her own words;

I can’t run. I don’t fancy jumping out of a plane and cycling makes me dizzy. But I can paint. Painting was my lifeline after my 3rd bleed and consequent brain surgery. My cavernoma was on my speech and language centre (left occipital- just above your ear!) and after my surgery I could hardly read, so I put my nascent novel on hold and sketched, drew and painted to help my somewhat battered brain to heal.

Like many of you, I got so much wonderful help, information and support from the Cavernoma Alliance UK that I wanted to give something back. So I painted four works that could be turned into art cards to raise funds. You will be able to buy them for £2.50 each at local Cavernoma Alliance events and at the York forum in June. All the profit goes to further the work. I have also donated the original paintings to be auctioned to raise more funds and you can put in a silent bid online below. You can own one of these painting to hang on your very own wall or you can form a small group to bid and donate the painting to brighten a venue dear to your heart, perhaps a hospital or doctors surgery.

Please bid generously, bidding is open to friends, family and anyone who is good for the money! Bidding will be via email up until the LIVE auction at the CAUK 2017 forum and closed on that day with the winner being notified if not in the room. If you are not at the forum the painting will be well wrapped and can be sent to you by a courier.

For more information, to view the lovely pictures or to place a bid, see here

11th International Cavernoma Alliance UK Forum (2017)

CAUK Members at lunchtime, Annual CAUK Forum, London, 2016

CAUK Members at lunchtime, Annual CAUK Forum, London, 2016

Our 11th International Cavernoma Alliance UK Forum is to be held for the first time away from London and in the north of England at the University of York. This will be an opportunity to especially benefit members in the north. For those who wish to attend from the south, fast trains from London to York take less than 2 hours.

Everyone is welcome, and as always, this event is free of charge – including lunch – and we would like you all to save the date, Saturday 24 June 2017.

The Forum will be held at the University’s prestigious Ron Cooke Hub (Lakeside Room) and will include Dr Connie Lee, President, Angioma Alliance USA, Dr Jenny Thomson geneticist, Chapel Allerton Hospital, Leeds and Mr Nitin Mukerji, neurosurgeon, James Cook University Hospital, Middlesbrough.

Campus accommodation will be available at Franklin House, on a first-come-first-served basis. This is a bed and breakfast service; both single and double rooms are en-suite and we have arranged a CAUK supper on Friday evening for those who arrive in York on Friday.

Accommodation can also be booked for the Saturday evening, 24 June 2017, so members can attend the CaverMorning which takes place at the Priory Street Centre in the middle of York, Sunday 25 June 9.30-1.30pm. This will be an informal time with a few fun workshops including one on drumming. There will be ample time for participants to attend the Jorvik Centre, the Minster, the Railway Museum etc.

Whilst the days are free, accommodation and an evening meal the night before (Friday 23 June 2017), are chargeable as is the accommodation for Saturday night. Accommodation rates include breakfast and VAT: £52.80 single; £90 double. (£20 per person for the Friday evening meal). The university has limited availability so visit the payment page and reserve with your credit card as soon as possible. Please note there is abundant parking (free after 6pm and all day at the weekends) and a free regular campus bus service to the venue from Franklin House.

When the accommodation becomes full at Franklin House, members can stay at either at the nearby Travelodge, Hull Road, York, or in the city centre a short bus journey away where accommodation can also be found at the Premier Inn, Blossom Street and at the Bar Convent both of which are just five minutes walk from the train station. (Please go to their websites for pricing and availability.) At this point, flexible rates (which allow for amendments/refunds) are extremely reasonable. As the event gets closer, accommodation will command a higher price if it’s available at all.

You can now book a place at the CAUK 2017 Forum here, and the CaverMorning.

CaverFamilies 4th Residential Weekend

With thanks to a grant from Children in Need, CAUK were able to provide ten families a weekend at a tipi and yurt farm in Hereford. On Friday 22 July 52 members, children and volunteers arrived at Woodlands tipis and yurts for the 4th CaverFamilies Residential Weekend. The weekend was jam packed with various activities for the children, design a Christmas Card, magic show, pottery painting, pizza making, design a t-shirt, farm trip, football, a pamper evening, and everyone enjoyed toasting marshmallows and plenty of outdoor playtime! Parents were able to relax and enjoy watching their children play in a safe and fun environment while sharing a mutual understanding of having a child/ren with cavernoma. On Saturday afternoon parents were invited to a mindfulness session, which many found useful, while the children were entertained. On Monday morning breakfast was served and goodbyes were made, many thanking CAUK for the fantastic experience. One child said that “this was his best holiday EVER”. The children were each given a CaverBear and craft tube, the parents were given a CAUK stress brain. Every family returned a feedback sheet with many positive comments. Thank you to everyone who came and hope to see you all next year, plus some new families!

Special thanks to those that volunteered their time to make this weekend a success, Simona Stankovska, Steve Seymour, Ellie Stankovska, Laura Seymour and Lucy Yeomans. Your help and support was invaluable.

For a full report on the weekend click here.

Review of events in June and July

Brighton CaverCentre

On Saturday 16 July 20 members and supporters of CAUK was in Brighton for the first
CaverCentre in the area. This meeting was a fantastic opportunity for newly
diagnosed and those wanting to meet up with old friends. Mr Mansoor Foroughi very
kindly gave 3 hours of his time to speak with people in a group setting and on an
individual basis. Many thanks to Lucy Yeomans, volunteer, for her help on the day.


Members chatting


Mr Foroughi (second from right)

Upcoming events

Please go to and book
your place today at any of the following events:

CaverFamilies events and meetings are exclusively for young people who have, or
have had, cavernoma, aged 16 and under, their parents and siblings.
CAUK organises various events throughout the year to give those children and their
families who are affected by cavernoma the opportunity to connect and find out more
about the condition. These events are vital in helping children and their families feel
more empowered to cope with an often difficult condition through increased
knowledge, and the support of other families in a similar situation.
Especially for CaverFamilies, CAUK and Children in Need present two fascinating and
informative interactive sessions.
Manchester Young People’s CaverHub and Parent Study Afternoon
You and your child/ren are invited to attend a CAUK CaverFamilies afternoon on
Friday 9 September 2016.This afternoon funded by BBC Children in Need, will be from
12:00 to 17:00 and is split into two parts. A letter can be furnished to your child’s
school so that your child may attend this important day.
Parents and children will be given lunch at the Ronald McDonald House (Hathersage
Rd, Manchester M13 0BH) at noon.

For the Parents:
At 12.30 parents need to leave their child at the Ronald Mc Donald House and make
their way to the nearby Nowgen Centre, 29 Grafton Street, Manchester, M13 9WU.
Organised by Dr Grace Vassallo, Paediatric Neurologist at the Royal Manchester
Children’s Hospital, the afternoon will include talks by clinicans for parents about
difficulties of living with children with cavernoma. Special guest will be Dr. Ed Smith
from Boston Children’s Hospital. A discussion session will follow and an opportunity
to talk individually to these clinicians. David White (CAUK Chair) will also discuss the
importance of uniting clinicians on treatment and management of cavernoma in
young people.

For the Children/Young People:
An afternoon of fun and education at the Ronald McDonald House. CAUK have
arranged for an experienced child therapist, who will to listen to any concerns or
questions your child may have. Entertainment, arts and crafts and refreshments will
be offered throughout the afternoon along with full supervision. All supervising adults
will be DBS checked.
Please RSVP by Friday 19th August if you would like to attend:, you will be given a programme on the day.
For parents who would like to attend the day but are financially challenged, you are
welcome to apply to the Welfare Fund c/o Ian Stuart, who
will forward your request the trustees for consideration.

London Young Persons and Parent CaverHub
Parents, children, and carers are invited to the following very exciting free
opportunity. Please come along and support your charity.
Rather than the Annual Autumn London CaverHub, Children in Need and Cavernoma
Alliance UK (CAUK) invite you to attend the London Young Persons and Parents
CaverHub, Saturday 15 October 2016, 11am at Coram’s Fields, a park in central
London. A “play haven” for young people, they will have access to a sevenacre
playground and be able to talk to professionals with hands-on experience of
young people in various stages of life living with a cavernoma.
The parents leave their children under the supervision of Claire Toolis, a
neurovascular clinical nurse specialist, Great Ormond Street Hospital
and Priscilla Alderson, professor emerita of childhood studies, University of London –
Angie Yeomans will be there too – and take a short walk to The National Hospital for
Neurology and Neurosurgery and listen to a presentation from Mr Greg James,
consultant neurosurgeon, Great Ormond Street Hospital.
Refreshments will be provided and lunch will be at the nearby Pizza Express, which is
included in the day.
Visit Coram’s Field here, for an idea of the excellent
facilities available.

2017 Annual International Forum

As a result of members’ feedback, CAUK trustees and staff are pleased to announce
that next year’s Forum will be held in the outstanding facilities at the University of
York on Saturday 24 June 2017. This will be preceded by supper for those who would
like to stay overnight on Friday 23rd. Continuing CAUK’s tradition, the day will be at
no cost.
One of the guest speakers will be Dr Connie Lee, president and founder of Angioma
Alliance our US colleagues. She will be talking about the very exciting developments
in the science of cavernoma, including the state-of-play of developments in
therapeutic drugs.
CAUK have speculatively reserved some accommodation at the University and
although it is a long way off please let us know of your accommodation requirements
as soon as possible, York is a popular holiday destination. For anyone who would like
to stay until Sunday, or just come on the Sunday, this will be a shorter informal day.
A fast train connects London to York in one hour, 53 minutes. For those
experiencing hardship, please apply to the welfare fund managed by the trustees c/o
Ian Stuart,

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