Announcement of Caver-no-more 2030 Essay Prize

Announcement

We are delighted to announce that Cavernoma Alliance UK (CAUK) is launching the “Caver-no-more 2030” essay prize for papers on anything related to cavernoma, with an award of £500 for the winner.  This essay prize is being launched as part of CAUK’s “Caver-no-more 2030” strategy with an ambitious goal of finding a cure for this debilitating condition by 2030.

In addition to the cash prize the Editor of the British Journal of Neurosurgery will review the paper and, if considered to be of an acceptable standard, will publish the article.  The winner will also have an opportunity to present their paper at a SBNS meeting.

The winner will be determined by judges from the SBNS and the editor of the BJNS.  The winner will be awarded their prize at the International Cavernoma Alliance UK Forum on the 8th June 2019.  The entry criteria for the prize are as follows:

  • Open to trainees in neurosciences or recently appointed consultants;
  • Approximately 3000 words in length excluding references, figures or tables;
  • To include original unpublished material or observations;
  • Declaration required from applicants stating they have performed most (i.e. more than 50%) of the work, with a letter to this effect from their Head of Department;

Submission deadline of midnight on Sunday 17th March 2019 at the end of Brain Awareness Week, with all entries to be sent to our CAUK Founder and Expert by Experience Coordinator Dr Ian Stuart info@cavernoma.org.uk. We very much look forward to receiving your submissions.

 

About Cavernoma Alliance UK

Formed in 2005 CAUK is a charity representingthe 1 in 600 people with an asymptomatic cavernoma and the 1 in 400,000 people who do experience symptoms from their cavernoma. CAUK is a member led organisationrun by and for those impacted by the condition, their carers and friends.The charity works from a model of empowerment, recognising the value of members’ lived experience providing mutual support; promoting awareness; and driving research into finding a cure. As a charity we exist for members at every point in their lives, providing holistic person-centred support.

 

For more information

More information can be found at www.cavernoma.org.uk, Twitter @CAUK1, Facebook @CavernomaAllianceUK and YouTube www.youtube.com/channel/UCbrM_Z0pdwt3xTGu-8BZ_Ww.  

 

Angioma Alliance hosts 14th CCM (Cerebral Cavernous Malformation) Scientific Conference

On the 8th and 9th November 2018, over 100 researchers, clinicians and pharma representatives from 5 continents are in attendance at the 14th Annual CCM Scientific Meeting searching for better treatments and a cure.  This important conference brings together world leading experts on Cavernoma, through whose collaborative efforts we hope in time will us to finding a cure for Cavernoma.

Following on from this is the Angioma Alliance National Patient Conference.  Sessions from this part of the conference are filmed and available on Angioma Alliance’s You Tube Channel, which can be found here.  Cavernoma Alliance UK is really please to have been invited to attend both meetings.  CAUK is being represented by its former Chair Dr David White who will be briefing members on his return.  Membership is free.  To sign-up click  here.

A warm welcome to Cavernoma Alliance UK’s new Chair, Dr Caroline Seddon

On the 19th October 2018 the Cavernoma Alliance UK Board elected Dr Caroline Seddon to be their new Chair, taking over from Dr David White who we’re pleased to say will be staying on as a Trustee.

Dr Seddon joins CAUK with substantial executive and volunteer experience in the charity, membership, higher education and research sectors. She is National Director of the British Dental Association, Wales; responsible for the strategic furtherance of BDA policies and promoting the interests of dentists, including by political lobbying. Dr Seddon was previously Chair of Breast Cancer UK, having been a Trustee for over five years. She was also a lay advisor at the Royal College of Pathologists and is now a lay member at the Board of Intellectual Property Regulation Board in London.

Much of Dr Seddon’s earlier career was in Higher Education with several senior roles including Head of Science & Education at the British Medical Association London, and Dean of School of Computing and Academic Studies at the British Columbia Institute of Technology. On returning to the UK, Dr Seddon was appointed Director at the National Childbirth Trust with a remit for publishing, education, training and research..

Dr Seddon retains a strong interest in applied human nutrition, which is the subject of her bachelors degree; and pharmacology, which is the field within which she did her doctoral thesis. Dr Seddon hopes to bring her cadre of skills and knowledge to CAUK for the development of the charity and its services to members; and to help in our understanding of the causes and treatment of cavernoma.

We are really excited to have Dr Seddon as our new Chair. We extend our heartfelt thanks to Dr David White for his service to date as Chair. In that time the charity has grown significantly reaching over 2,000 members impacted by cavernoma. We are pleased to say Dr White will be staying on with CAUK as a Trustee and is supporting Dr Seddon through her induction.

“I would like to pay tribute to my predecessor, Dr David White, who has done a tremendous amount to develop the charity into what it is today; and to its Founder Dr Ian Stuart, who has inspired me greatly. I look forward to meeting members over the next few months and to learn about their hopes for the charity in the future.”

Dr Seddon can be contacted at chair@cavernoma.org.uk and will be attending our Christmas Party, which will be held on the 8th December in Central London and open to all members and their families and friends. Membership is free. To join go to www.cavernoma.org.uk/sign-up.

Neurological Patient Experience Survey 2018

A new neurological patient experience survey is open, to collect vital information about the experiences of treatment and care, social care and welfare received by people affected by neurological conditions. The survey aims to collect enough data to positively influence future neurology services; including services in respect of cavernoma.

About the survey

The survey is by The Neurological Alliance – an organisation that brings together organisations working to make life better for millions of people in England with a neurological condition. Through the patient experience survey, The Neurological Alliance aims to positively influence the future quality of neuro health and social care services. Too often services fall below the standard expected. This survey aims to help change that.

CAUK fully supports the Neurological Alliance in its ambitions. We welcome the survey as an important tool in gathering shared insights across neurological conditions. The neurology community is strong when it stands together.

What will happen with the results?

The Neurological Alliance will publish the results in a report in summer 2019. This report will set out a comprehensive picture of what is happening in relation to neurological services and make recommendations about how care can be improved. The survey findings will be shared with CAUK members and used by CAUK to inform our future strategic plans.
The Neurological Alliance’s previous two patient experience surveys made a significant impact:

  • Made the case for continued national leadership for neurology. National Neuro Advisory Group set up.
  • Getting the National Neuro Advisory Group to prioritise care planning and communication with patients.
  • Fed into NHS long term plan.
  • Developed a programme of work on mental health and neurology, report published.
  • Influenced the development of NICE guidance on suspected neurological conditions.
  • Raised the profile of neurology through media work.

How do I complete it?

The survey is open from 17th October 2018 to 17th January 2019. It is for anyone with a neurological condition living in England. Carers can help complete the survey as needed. The survey may take around 25 minutes to complete.

Please be aware that you cannot save your answers and come back later. Your responses are completely confidential and anonymous.

Please click below to complete the survey;
http://www.myonlinesurvey.co.uk/NA18PAT/

Our new CEO, Helen Evans on her first day

We are delighted to announce that today is the first day for Helen Evans as our new Chief Executive. Helen brings a wealth of relevant skills and experience that we are confident will take CAUK through to its third phase of development, building on the success of our Big Lottery funded Big Step project. Until recently Helen was Chief Executive of Getting Heard, an Oxfordshire based advocacy charity. Under her leadership the charity was awarded the prestigious Quality Performance Mark, secured multi-year Big Lottery funding and was one of the first providers of Care Act advocacy in the UK.

Before working in the UK charity sector Helen was Head of Safeguarding for a global aid agency, having transitioned from an earlier 10 year career in international Human Resources. Helen is also an alum of the Jo Cox Women in Leadership Programme and former select committee expert witness. Helen will start on the 17th September 2018 and will be home-based, travelling as needed, working from 9.30am to 2.30pm every day except Monday.

Helen has created a special video for her first day, which you can see below…

CaverChat Closing

The CaverChat facility of our website will be closing from today, 17th September 2018, due mainly to lack of use. The majority of our members have chosen to use the facebook groups to communicate and so we highly recommend people visit those groups instead.

ANNOUNCEMENT – Appointment of Helen Evans as our new Chief Executive

Helen Evans Profile picture

Helen Evans Profile picture

We are delighted to announce the appointment of Helen Evans as our new Chief Executive. Helen brings a wealth of relevant skills and experience that we are confident will take CAUK through to its third phase of development, building on the success of our Big Lottery funded Big Step project. Until recently Helen was Chief Executive of Getting Heard, an Oxfordshire based advocacy charity. Under her leadership the charity was awarded the prestigious Quality Performance Mark, secured multi-year Big Lottery funding and was one of the first providers of Care Act advocacy in the UK.

Before working in the UK charity sector Helen was Head of Safeguarding for a global aid agency, having transitioned from an earlier 10 year career in international Human Resources. Helen is also an alum of the Jo Cox Women in Leadership Programme and former select committee expert witness. Helen will start on the 17th September 2018 and will be home-based, travelling as needed, working from 9.30am to 2.30pm every day except Monday.

You can view Helen’s introduction video by clicking here

Helen Evans, new Chief Executive says:

“I am delighted to be joining CAUK and to have the opportunity to take CAUK forward in its third phase of development, building on the success of the Big Lottery funded Big Step project. The work that CAUK leads is critical to meeting the needs of those impacted by cavernoma, and I very much appreciate the opportunity to be a part of this.

On starting at CAUK I anticipate my priorities being twofold: to meet, listen and respond to the needs of the CaverCommunity; and to also lead fundraising efforts ensuring the continuation of activities funded until September 2018 by the Big Lottery. Whilst I don’t have personal experience of cavernoma, I do know what it’s like living in a family impacted by long-term ill-health. I will be coming to this role with the passion of someone who knows first-hand what a difference a charity like CAUK can make, and will be drawing on my experience as a former Chief Executive to ensure CAUK continues building on its successes to date.

May I take this opportunity to acknowledge and thank your Chair of Trustees, Dr David White, who will shortly be taking a well-deserved step back from his role as Chair. I am also thankful to CAUK’s founder, Dr Ian Stuart, without whom this charity would not have been established and who will continue to be our Co-Ordinator. I am very excited to have the opportunity to work for CAUK and look forward to getting to know you all come mid-September”.

Dr David White, Chair of Trustees says:

I am thrilled with the appointment of Helen as the first Chief Executive of Cavernoma Alliance UK. Helen’s experience in the charity sector, both large and small, provides a wonderful background for us as we move into a new phase in our existence.

Dr Ian Stuart, Founder and Co-Ordinator says:

I am very excited at Helen’s appointment, and I looking forward immensely to working with her. She will enable us to move forward with confidence at an exciting time for supporting our greatly increasing membership and the development of new forms of therapy.

Next Steps

The Board of Trustees will be overseeing Helen’s induction and will ensure she has as many opportunities as possible to meet with cavernoma members, within the 18 hours per week her role permits. As discussed at our Annual General Meeting our Big Lottery funding ends this September, meaning one of Helen’s key priorities will be securing alternative funding as well as getting to meet CAUK members. If anyone has any questions or comments about Helen’s appointment please do not hesitate to get in touch.

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/

By continuing to use the site, you agree to the use of cookies. Privacy Policy

The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.

Close