March 2011 e-mailshot

Subject: Cavernoma Alliance UK - March 2011 e-mailshot

Dear %%salutation%%

Welcome to our March e-mailshot bringing you the latest news about Cavernoma Alliance UK.

We now have more than 350 members' stories online in our Members' Area at <https://member.cavernoma.org.uk>. Alice had the honour of being number 350 but we're already pushing towards 360 - we put member 355 online on Sunday. Plus there's been some updates by existing members so if you've not been to visit for a while you might like to do so. If you've forgotten the username and password then drop us a line. And do check your own story, we always like to get updates.

This is also a good time to remind you about data security, both our responsibilities to you (to keep your stories confidential) and yours to other members. You can read more about that at <http://www.cavernoma.org.uk/data_protection.html>

As you know we now have all your records in a secure online database to make it easier for us to manage them and to make it possible for you to update them yourself and this e-mailshot is one of the benefits as it makes it easier for us to send out.

A reminder that you can see the data we hold on you at any time, and change it if appropriate, here

   http://www.cavernoma.org.uk/m-%%memberCode%%

So if any of your details change, like email address, phone numbers, postal address or surname then please do remember to update your details so that we can keep in touch with you. As we said when we first mailed you about this there are two new fields which weren't on the original sign up form which we'd be grateful if you could update if you haven't done so already:

1. We asked you for “age now” on the original form, which was a mistake because as time goes by you're getting older so the field gets less useful. So now we want to hold your date of birth instead. If you're not happy giving us your full date of birth then please just enter 1st January but the right year. The current date of birth we have recorded for you (in year-month-date format) is %%DateOfBirth%%.
2. We would also like you to answer the additional question “Symptomatic” and indicate if your cavernoma has never been symptomatic (i.e. it was discovered for other reasons), was symptomatic on discovery but is no longer symptomatic, or was symptomatic on discovery and is still symptomatic now. Currently we have this recorded for you as ”%%Symptomatic%%”

For the first time CA UK was represented at three of the four Parliaments: Godsal, CA UK Scottish representative, in the Scottish Assembly; the London Parliament, Frank Gent, trustee, Ian Stuart, founder member and co-ordinator; and in Wales, Alison Garwood, trustee. You can see report here <http://www.cavernoma.org.uk/rdd_2011.html>

Godsal, CA UK's Scottish Co-ordinator and member number 50, ran a CaverHub in Glasgow at the Quaker Meeting House, Charing Cross, Glasgow, G2 4PS, led by the neurologist, Dr. Rustam Al-Shahi Salman (a cavernoma specialist) and Mr. Jerome St. George, consultant neurosurgeon, of the Institute of Neurological Sciences, on Saturday, 12th March.

The speakers' presentations happened first in the morning, followed by lunch (home made sandwiches, humus and banana cake). The afternoon was dedicated to a “round the room discussion”, where we each introduced ourselves and stated why we were attending, and then discussing both issues that had come up as a result of the morning's presentations, and other issues that came up through conversation or concern. This was an opportunity to chat to specialists and talk about issues with them, as well as an opportunity for peer support, advice and guidance.

Total in attendance nine, inclusive of the speakers. Rustam sadly had to leave at lunch time, but Jerome stayed for the afternoon session. The peer discussion was balanced well by having Jerome in attendance; it wasn't too focused on interogating the “expert”, but was useful to have both his response as well as patient response to some of the issues raised. Krystle Kontoh from Genetic Alliance UK was also able to report on her work to date with CA UK, as well as passing on contacts for colleagues who are specialist in different areas.

It was agreed that the event was a successful and useful platform for all, and we hope to hold a Scottish meeting annually as part of Brain Awareness Week. We briefly touched on the idea of fundraising to support this activity, and it might be nice if each meeting was held and hosted in the home town of different CA UK members.

Fifty eight people came to a CaverHub in London on Saturday, 19th March to hear Sarah Akhtar from the Brain and Spine Foundation; Tahani Saridar from the Neurological Alliance anf Mr Neil Kitchen, Consultant Neurosurgeon, discussing “Why Surgical Removal of a Cavernoma May Not Always Be a Good Idea”. This CaverHub formed part of International Brain Awareness Week.

Following on from the regional CaverHubs the board of CA UK are establishing the first ever Young Persons' CaverHub (YPC) in London. The confirmed speakers for this event will be: Louise Derbyshire of Contact A Family, Krystle Kontoh from Genetic Alliance UK and from Great Ormond Street Hospital for Children, Consultant Paediatric Neurosurgeon, Ms Jessica Ternier.

This inaugural YPC will take place for parents, children and other interested parties on the 9th April 2011 in The Old Boardroom, National Hospital for Neurology and Neurosurgery, Queen Square, London WC1, from 10am until noon. We are planning an optional lunch at the Rainforest Cafe (which is ideal for children) followed by a trip to the London Aquarium. We applied for funds from Roald Dahl's Marvellous Children's Charity. Cavernoma Alliance UK are pleased to report that we have been successful in our funding application. So we can confirm that this event will be free. Please RSVP to Brana Thorn branathorn@googlemail.com to secure a place.

(If you've updated your entry in our database to say you are the guardian of someone with a cavernoma or the person with a cavernoma is under 18 you should have already have had notice of this event. If you haven't you should perhaps update your details as explained above.)

Due to the number of appointments held by Mr. Kitchen at The National Hospital for Neurology and Neurosurgery, Queen Square, CA UK is pleased to announce the formation of our own stand-alone CaverClinic to begin in April 2011.

To remind you of Dr. Rustam Al Shahi's willingness to hold a neurological CaverClinic in Edinburgh, Scotland.

According to financial need, and with prior approval, 2nd class advance purchase rail travel can be reimbursed for members wishing to attend these clinics.

Please contact the co-ordinator for further information, info@cavernoma.org.uk

… and finally you should have already received your invitation to the fifth International Cavernoma Alliance UK Forum which will be held on Saturday 4th June 2011 at the Orion Suite, Grange Holborn Hotel, 50-60 Southampton Row, London WC1B 4AR from 9am to 5pm. This free event will include speakers, lunch, and informal workshops (details of which can be found on our web site) so do please try to come along. You won't be disappointed. More details can be found here <http://www.cavernoma.org.uk/forum_2011.html>

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