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CAUK UK Summer Party 2018

You are cordially invited to

THE CAVERNOMA ALLIANCE UK SUMMER PARTY

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!

RSVP: press@cavernoma.org.uk

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; https://art.cavernoma.org.uk/

Introducing our new Northern Community Worker, Ailsa Crowe

We’re happy to announce that Ailsa Crowe will be joining the CAUK team as our new Northern Community Worker.

In her own words, a brief biography


Hi all! I’m Ailsa
I’m 27 years old from Glasgow and your new Northern Community Worker! Two years ago in October I was diagnosed with a right thalamic Cavernoma after suffering a bleed whilst living and working abroad. I moved back to the U.K. to get the help and support I needed and have spent the time adjusting to my new normal. I have found CAUK to be an incredible source of information and support since day one and am delighted to have the chance to contribute to something that means so much to so many of us!

A little bit about me… I have a Masters degree in Logistics, I have lived and worked in 6 different countries and speak fluent Spanish! I love to travel and to read, and sport (especially tennis) has been a huge part of my life. I’m hoping to get back on the court one day soon! I’m an outgoing, sociable person and I’m looking forward to meeting and/or speaking with all of you ‘Northerners’ soon!

I’m sure you’ll all join us in welcome Ailsa to the team – if you’d like to contact Ailsa, you can contact her via her email address ailsa@cavernoma.org.uk

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

Team Squalo, Crossing the Sicilian Channel

Team Squalo

Team Squalo

In July 2016, Team Squalo, undertook the amazing feat of swimming the Sicilian channel raising an incredible £2000 for CAUK, completely smashing the original £800 target! Team members consisted of Florent, Marco, Maurizio, Marc, Clement, and Federico.  Congratulations and a big thank you to Team Squalo. 

 

CaverFamilies 4th Residential Weekend

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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.

New report identifies GP’s concerns for people with neurological conditions

A new report published by the Neurological Alliance has found that GPs in England lack confidence in the primary care pathway for people with neurological conditions. New polling of GPs across the country shows low levels of confidence in the ability of local services and systems to manage neurology patients effectively, and widespread concern over unnecessary delays. It also suggests that GPs feel they would benefit from more support to manage people presenting with suspected neurological symptoms.

The Neurology and primary care report, available at http://bit.ly/2bfLdkh, presents the results of a survey of 1,001 regionally representative GPs from across the UK (England) and an expert workshop convened in December 2015. The report focuses primarily on England but additional UK-wide findings are included in the appendix.

The report finds that:

  • 85% (of 708) of GPS in England are either ‘somewhat concerned’ or ‘extremely concerned’ about the time taken from referral for patients to see a consultant neurologist.
  • 59% (of 492) of GPs believe that the local services and systems in place in their area mean that people with neurological conditions frequently do not receive a timely diagnosis.
  • The large majority of GPs in England (84%, of 70) feel that they could benefit from further training on identifying and managing people presenting with neurological conditions.
  • Fewer than half of GPs (47% of 392) felt confident in their ability to make an initial assessment and referral for people presenting with signs and symptoms of multiple sclerosis.

The report also sets out eight recommendations aimed at improving the primary care pathway for people with neurological conditions, including a call for the development of a pan-neurological ‘watch list’ of the ten signs and symptoms GPs should be aware of during patient interactions in primary care settings.

Arlene Wilkie, CEO of the Neurological Alliance, said: “It is essential that NHS England and the Department of Health respond to these findings and engage with the concerns of GPs and people living with neurological conditions. Without an effective pathway through primary care, patients will continue to suffer the consequences of undue delays to referral, diagnosis and treatment, and outcomes will continue to suffer.”

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.

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Members chatting

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Mr Foroughi (second from right)

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