International Forum

Concerns specific to those in the United Kingdom

International Forum

Postby ianstu » Sat Feb 11, 2012 11:38 am

Dear Members of Cavernoma Alliance UK,

The Board of Trustees invite you to attend the International Cavernoma Alliance UK Forum. Held slightly later this year because of the Queen's Diamond Jubilee celebrations, the Forum will be on Saturday 16th June 2012 in the Orion Suite, Grange Holborn Hotel, 50-60 Southampton Row, London, WC1B 4AR from 0900 to 1700.


The Board have always maintained everyone should have free access to every Forum. So, the event is free (including a buffet-style lunch), to all registered participants. To register, please contact


Please come along and support your charity. Your attendance is essential. At the 2010 and 2011 Forums many more members registered than actually attended. Despite scarce funding, Cavernoma Alliance UK organises this International Forum at a key venue, the Grange Holborn Hotel, London. This is made possible through the support of sponsors, many of whom are yourselves. Former international speakers have included Professor Awad from America, and Professor Dr. Helmut Bertalanffy. Professor Awad and Bertalanffy's lectures, along with neurologists, geneticists, neurosurgeons a neuroradiologist, and a neuropsychologist from the 2007-2011 Forums, are available to view on our website here.

The 2012 Forum features a leading neurosurgeon, a neurology epilepsy specialist and a physiotherapist, in addition to member-led workshops. Emma Ramsay will hold a workshop on living with a cavernoma, Pat Spallone and Emily Fletcher, who underwent surgery by Mr. Kitchen, will lead a group on surgery and cavernoma. Brana Thorn and Paula Wheeler will run a carers' workshop for those who look after family members/children or friends with a cavernoma. And Ian Wallace will discuss with a group the genetic aspects of cavernoma.


Cavernoma Alliance UK can also meet UK travelling costs if the member is experiencing severe financial difficulty. This concession is available with prior clearance only. Standard, advance purchase rail travel, with a railcard if possible.

If you have mobility issues, a disabled persons railcard may be available. The advantage of having a disabled persons railcard is that you AND the person travelling with you get a third-off the price of a train journey anywhere in the country. This railcard is valid for one or three years (renewable) and can be used any day of the week. In England, members may also qualify for a disabled persons bus pass if their driving licence has been withdrawn for medical reasons.

Contributions towards the cost of the Forum are always very welcome. Please see our Treasurer, Tim Millward, at break-times.


This year the Board is pleased to announce the 2012 keynote speaker is Mr. Owen Sparrow MMed, FRCS, FRCSEd, FCS(SA), consultant neurosurgeon, University Hospital, Southampton. Cavernoma Alliance UK is very fortunate to have Mr. Sparrow as a speaker.

The Morning As with last year's Forum, the International Cavernoma Alliance UK Forum 2012 begins slightly later in the morning to allow members from further afield to attend. The Forum will also follow last year's successful format. Registration commences at 0900 in the reception area on the first floor. At 0920, Ian Stuart (founder member and co-ordinator) welcomes everyone. At 0930 promptly Mr. Owen Sparrow will talk on cavernoma.

Following morning coffee, in the adjoining Perseus Suite,1030-1100 members will find that the Orion Suite has been partitioned into break-out areas. Please ensure personal effects are removed from the Orion Suite during the coffee break.

In response to members' requests, and in order to give members' discussions a greater prominence, CA UK presents four workshops of which members will be able to choose two. We have full details of the workshops online here (Adobe/PDF, 36KB).

The Afternoon Following a one hour break at 1300 for a complimentary lunch in the Hotel's Constellations Restaurant, members gather at 1400 (sharp) in the Orion Suite for a talk by Sofia Eriksson MD PhD, consultant neurologist, National Hospital for Neurology and Neurosurgery, Queen Square, London entitled "Epilepsy and cavernomas - clinical presentation and treatment options". Our final speaker will be Fran Brender Dip Phys, MCSP, MSc, also from the National Hospital for Neurology and Neurosurgery and is a clinical specialist in physiotherapy. Fran's talk will be on physiotherapy following stroke/intracerebral haemorrhage.

After tea, served in the Perseus Suite, at 1630 members will meet at the 2012 Annual General Meeting, to vote upon the trustee board, discuss the Forum, and the charity's work. PLEASE SUBMIT YOUR EVALUATIONS AT THIS TIME. The Forum will finish at 1700.


Reduced-rate accommodation is available at the five-star Grange Holborn Hotel. The standard rate in June is approximately £300 per night. For those attending the Cavernoma Alliance UK Forum the price is reduced to £95.00 plus VAT for Friday 15th June and £100 plus VAT for Saturday 16th June 2012. Accommodation is limited. Booking early will secure a room. Situated in Bloomsbury, the Hotel is five minutes walk from Holborn Tube station on both the Piccadilly and Central lines. More information is available on the Hotel's web site. Contact the hotel directly about parking arrangements, if required.


You need to make your own bookings by calling Cavernoma Alliance UK's contact, Nandita Rai, at the Central Reservations Office, telephone 0845 450 4400 (UK only) quoting reference number 150612S, or email, quoting the same reference number. The international telephone number is int. code +44 (0)207 233 7888 . To hold the reservation a credit/debit card will be needed. No charge is made against the card until the member leaves the Hotel. At that point the cardholder will be able to choose whether they prefer to use their credit card or pay in cash. Upon calling, members should also state how many nights are required. Hotel bookings need to be made no later than 8 April 2012. At the time of booking, please indicate whether a double or twin bedded room is required. (NB. The price is for the room NOT the person so you can save money by sharing. Maybe the Cavernoma Alliance UK mailing list might be a good posting site for members of the same gender wishing to share a room).


Alternative accommodation is available for members who are "financially challenged". The Grange Holborn offers exceptional value. However, as an alternative, we recommend The Crescent Hotel, 49-50 Cartwright Gardens, Bloomsbury, London, WC1H 9EL. Telephone: int. code +44 (0)20 7387 1515 ; Fax: int. code +44 (0)20 7383 2054 . At the time of writing, the Crescent Hotel has individual rooms with prices starting from £54 inclusive of VAT and cooked breakfast. The Hotel is about twelve minutes' walk to the Grange Holborn Hotel. Members can look in the London suburbs for less expensive accommodation. As registration commences at 0900 please allow plenty of time to get to the Forum.

Please RSVP to by 1st May 2012.

The Board looks forward to welcoming you to the 2012 International Cavernoma Alliance UK Forum.
Coordinator, Cavernoma Alliance UK
Posts: 11
Joined: Mon Sep 27, 2010 8:08 pm

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