Archive | News

CAUK Conquers Everest

You all do an incredible job raising funds and we are extremely grateful. But so many of the usual methods have been taken away from you, and charities are facing a 40-60% drop in income. What can be done? Let us know of any ideas you have, but we also want to start here and now, with us…

Our wonderful Administrator, Sian Oliphant, has come up with a truly horrible idea! She thinks the staff should do a sponsored team mountain climb. As we can’t leave the house, she tells me we can do this virtually at home, using our stairs. Apparently 58,070 stairs is the equivalent of climbing Everest.


We’ve decided to start with the Three Peaks, and build up. Three Peaks in 7 days! If you would like to sponsor us go to


Chat and Catch Up Volunteers

The NHS is running an excellent scheme, pairing up volunteers to call or message people who are self isolating at home. We would like to do the same, specifically for people living with Cavernoma, using volunteers who understand the condition.

Would you like to volunteer to help? Or would you like someone to contact you for a catch up each week? Let Tracey know by emailing

Coronavirus and Cavernoma

Updated: 17 March 2020 at 16:18

As the situation with Coronavirus (Covid-19) develops, we all need to be thinking of ways to keep ourselves and our families safe.

For people with Cavernoma, there is no increased risk of catching the virus. However, it is sensible to take reasonable precautions to reduce the chances of catching Coronavirus.

We recommend all follow the current NHS and Government Guidance on sensible precautions to take, such as on hygiene and travel.

Self Isolation Advice

We have been asked whether people with cavernoma should self isolate in view of the Government’s updated guidelines. These stated that people with long term health conditions that would normally require them to have the flu jab, should do so.

Some parents have had letters from school indicating that people with “chronic neurological conditions” should self isolate for 12 weeks. They have asked us if this includes people with cavernoma.

Our Medical Adviser, Professor Rustam Al-Shahi Salman gave us the following direction:

Cavernoma is not specifically mentioned as a condition that requires people to have the flu vaccine (

For most people, cavernoma is not like, “chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy.” But for patients with cavernoma who are impaired in a way similar to patients with the conditions above, it would be sensible to consider the social distancing measures recommended by the Government.

The situation, and decision made by individuals, will be different depending on the particular individual and the symptoms they experience.

Medication Advice

If you are currently taking medication, and become unwell, it is important to keep taking your medication.

  • Regarding anti-epilepsy medication – remember that fever reduces the seizure threshold. It’s important to stay on your anti-seizure medication unless instructed by a doctor to do otherwise.
  • Regarding propranolol – “Beta-blockers are not immunosuppressive agents BUT they can worsen the symptoms of a viral illness such as wheezing.” If you become ill, you should discuss discontinuation with your medical provider.
  • Post-surgical care – those who are recently post-surgical will need to be extra mindful of social distancing and hygiene as you need time to recover. Also, if you’ve been given an incentive spirometer for pulmonary exercise, it’s very important to use it.


All of our events are currently cancelled. 

We will be looking at trying to re-schedule these events at a later date once things settle down, or some events may be replaced by virtual online webinars. We will provide more details when we have them.

Please check back regularly for future updates.

Annual Forum May 2020

Following the Government’s updated advice on 12 March, we are looking at the best ways to ensure everyone is kept safe. For people with a cavernoma, there is no increased risk of catching the virus. However, Government advice is to extra precautions to reduce risk for people with existing health conditions.

As a result of this, we have taken the difficult decision to cancel the 30-31 May 2020 Annual Conference.

What will we do instead?

We have some exciting talks and presentations planned for you, and we don’t want you to miss out. Therefore, we are busy arranging for the sessions to be held Virtually. As soon as we have the details in place, we will let you know how to sign up to the virtual sessions.

Like you, we are very disappointed not to be meeting you all in person this year. But we have a responsibility to each and every one of you and we wish to fulfill that with care. The virtual conference will be an exciting venture, and will pave the way for future webinars that will be available to everyone, regardless of whether or not you can travel.

What about next year?

We know how valuable it is to meet in person, and will plan to hold these events, as normal, next year.

We will update this information as the situation progresses.

Summer Magazine

£1 million research application submitted, £10k award from the National Lottery Community Fund and more! To read click HERE.

Spring Magazine

In this edition – CAUK meets The Queen, latest research developments, member Chris shares his cavernoma journey… and much more! To read our Spring Magazine click here.

January Magazine

We’re delighted to share the January 2019 edition of our new look CAUK magazine. To read simply click here.

In this edition we share two exciting opportunities to participate in research as part of our #CaverNoMore 2030 campaign. These opportunities are for people pre-op with a brain cavernoma or for anyone with a spinal cavernoma.

We also remind you of the date for our Annual Forum – 8th June 2019 at the De Vere Horsley Estate in Surrey. We have a number of accommodation options listed on our events page. If you want to stay in the castle do book soon, you have 2 weeks left until they open rooms up.

Not yet a member? Membership is free and will mean you get our magazine emailed to you along with many other benefits. To sign click here.

Best wishes,
Helen, Chief Executive of CAUK

Announcement of Caver-no-more 2030 Essay Prize


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 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, Twitter @CAUK1, Facebook @CavernomaAllianceUK and YouTube  


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 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

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;

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