Next Family Weekend

Sturge Weber UK Family Weekend Conference

19th, 20th and 21st October 2019

The next Family Weekend Conference will be held at the Hilton Coventry which is located off Junction 2 of the M6. There is a Swimming Pool, Steam room and Sauna, and you can relax in the LivingWell Club.

Last Conference May 2018

Saturday Morning will begin with registration and coffee will be from 11am with entertainment by Bugs n Bones for the children.

A buffet lunch will be at 12.30pm.

After lunch, the British Association of Skin Camouflage  will present Camouflage - An Important Role in Patients Well Being. Followed by Laura Carr from HCB Solicitors who will talk about ECHPs and SEN provision. There will be crèche facilities in the afternoon for the children and time for a swim before the evening meal.

Registration will be from 5.30pm for those arriving later in the afternoon. The children will be entertained by Paul Edwards Entertainments at 5.30pm giving time for families to relax and socialise before dinner at 7.00pm. Paul will again occupy the children until 9.00pm. Since Sunday is always a busy day, Saturday evening is a good opportunity for everyone to socialise.

Registration will be from 8.15am for the children going on the trips and those staying in the creche. We have chosen two venues for the Sunday outing: Twycross Zoo and, for the over 8s, if they wish, Whitemoor Lakes Action Centre Tinies Mobile Crèche will be looking after the children again this year. A suitable trip will be arranged for the children. There will be crèche facilities in the hotel for the very young children, those who are vulnerable and the ones who do not wish to go on the trip. While the children are having fun the parents and carers will have the opportunity to listen to the talks on different aspects of the syndrome. Coffee/tea will be served for the parents and visitors and registration for those attending just for the day.

The day will begin with the AGM, followed by the speakers.

Dr. Sarah Aylett, Consultant Paediatric Neurologist from The Sturge Weber Clinic, Great Ormond Street Hospital, London.
Dr Veronica Kinsler, Consultant Paediatric Dermatologist at Great Ormond Street Hospital, who unfortunately couldn’t be with us the last time has agreed to come and speak this year.
Dr Gemma Wilson, Clinical Psychologist from GOSH.
Jackie O’Kelly, Parent Adviser from Contact,  will speak about Financial support for families with disabled children”.

A carvery lunch will be at 12.30 in The Larder restaurant.

Sunday Evening will begin at 5.30pm with entertainment for the children by Mark Traversoni.
Families can relax for an hour and a half while their children are being entertained until dinner at 7.00pm. Mark will be performing Table Magic from 7.30pm until 9.00pm. Jane Howard is organising more fun again until the children are too tired and go to bed.

As the children enjoyed the Balloon Race, we are hoping to organise one again on the Monday morning. Since it is the May Day Bank Holiday Monday, there will be lunch served in The Larder restaurant at 12.30 so families can socialise a little longer.

The Committee look forward to seeing you all again and especially our new members.

The booking forms have been sent out.