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.
Author Archive | Helen Evans
With thanks to our patron Sacha Bonsor we’re delighted to invite you to our 2019 Autumn Ball.
This fundraiser will be held on Saturday 12th October 2019 at Ekte Nordic Kitchen https://ektelondon.co.uk/. Guests will be offered an authentic Scandinavian experience in the heart of London’s financial district. Included in the price of each £120 ticket (£100 earlybird discount if booked by 30th June) will be a delicious three course meal, half-bottle of wine, bubbly on arrival and charity auction.
Guests have the option of taking an exclusive table for 8 people or to join other guests for their dining experience. It would be fabulous if you could join us. Whether you’re a CAUK member or not this event is open to all. To reserve your table we just need guest numbers emailed to firstname.lastname@example.org, with more details to then follow regarding menu choices.
We expect this to be a popular event so do book soon!
A common question asked is whether the DVLA (Driver & Vehicle Licensing Agency) need to be informed of a cavernoma diagnosis, particularly if it is an incidental finding and asymptomatic.
The DVLA do require people to disclose a cavernoma diagnosis and a failure to make this declaration can result in a £1000 fine: https://www.gov.uk/angioma-and-driving.
The DVLA will assess each disclosure on a case by case basis, taking into account any symptoms you present with. Many people with cavernoma who disclose their condition to the DVLA are able to continue driving.
If you have a query the DVLA can be contacted by telephone on 0300 790 6801 from Monday to Friday, 8am to 7pm, and Saturday, 8am to 2pm. More information can also be found at https://www.gov.uk/driving-medical-conditions.
This Rare Disease Day can you post a photo of you blowing a raspberry at cavernoma, with the link http://bit.ly/blowraspberries2019, to promote our £3 per month campaign to find a cure?
We want to make as much noise as possible about cavernoma this Thursday 28th February. If you use the hashtag #BlowRaspberries or tag photos to @CAUK1 or CavernomaAllianceUK we’ll then re-post.
You can also help by asking your local paper, radio station or TV network to share your cavernoma story and improve awareness. We have a template press release you can use, along with other campaign materials:
Rare Disease Day is a global event held to raise awareness about rare diseases and their impact on patient lives. Building awareness is incredibly important with 1 in 20 people living with a rare disease at some point. Despite this there is no cure for the majority of rare diseases, including cavenoma.With your help we can change that!
To donate £3 a month* click here.
* When you click through you will be invited to make a single £3 donation. To make you donation monthly, making even more of an impact, click the “monthly” tab.
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.
Helen, Chief Executive of CAUK
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 email@example.com. 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
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.
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 firstname.lastname@example.org 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.