4 days to Rare Disease Day

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.

January 2019 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

Urgent call for National Neurology Plan

People with neurological conditions are facing long waiting times, poor access to specialists and a lack of personalised care. That’s according to a new report published by The Neurological Alliance.

The survey was the largest ever survey of people with neurological conditions in England with 10,339 responses. It also found failings in the social care and welfare system, as well as discrimination in the workplace for people with neurological conditions.

The Neurological Alliance argues that a National Plan for Neurology in England must be urgently developed to address the failings in the system.

For more information go to:

http://bit.ly/neuropatiencesurvey2019

Driving with cavernoma

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.

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…

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