Proteus Family Weekend 8/9 June 2013
We would love to welcome you to this year's Weekend get-together in London, our 8th Family Weekend. We meet every other year, welcoming families from the UK and abroad, ages ranging from a few months old to those who've picked up their Bus Pass!.....and have met as far afield as Manchester, Bristol, Coventry, Stratford and London......it's such a good time to meet others living with Proteus. KT and their associated conditions, such as Hemi-hypertrophy and people always come away saying how much it meant to them......
We like to make sure everyone has a great weekend, so we always treat our members to a day out on the Saturday. This year members can choose from a Hop-on Hop-Off ticket for the Thames River Bus or a ticket for the Royal Observatory and Flamsteed House, both only a few minutes from the hotel. In the evening there is a social get together for all the family.
On Sunday morning we have our AGM followed by the main meeting at 11.00am. when you can hear more about recent research into the cause of both Proteus Syndrome and Klippel Trenaunay and also learn how you can be a part of the newly established Genetic testing - see more about this on our Research Page. We will also be holding a Q and A session where you will have the opportunity to ask the Medical Professionals the questions that concern you and your family.
If you want to know more call the support line on 01785 661263.................
See you there......?Click here for a booking form
Past Family Weekends.........
Family Weekend 2011, Stratford-upon-Avon
Lots of us met again in Stratford-upon-Avon at the Holiday Inn on the banks of the River Avon. On the Saturday some of us enjoyed a cruise on the river....wiith a cream tea....whilst others visited Europe's biggest butterfly farm and had a little bit of retail therapy in Stratford itself. We welcomed 14 familes with three new families also joining us - two families flew in from Sweden and one from Ireland and some joining us for the Sunday morning main meeting.
On Sunday morning we were pleased to welcome Ms. Meryl Davis, Consultant Vascular surgeon at the Royal Free Hospital in Hampstead, London and Jane Linward, Clinical liasion nurse at Great Ormond St Hospital. There was a good discussion on how to move forward in securing a specialist adult clinic in the UK and the difficulties in moving from paediatric to adult care.
Family Weekend 2009, Manchester
On Sunday morning, families were able to meet orthopaedic, vascular and genetic specialists, whilst the children enjoyed an entertainer and games. All to soon it was time for a buffet lunch before the weekend came to a close and we went our separate ways. It was a great weekend and we already have people who 'just can't wait' until the next time..!!
Family Weekend 2007, Bristol.
The 2007 family weekend took place in Bristol. Once again it was great to meet up with one another and to meet new families. We welcomed families from around the country, with some friends joining us from Ireland. Many families took up the offer of free family tickets for a day at Bristol zoo, whilst others opted for a visit to the SS Great Britain in Bristol harbour. Whichever was chosen, all had a great day and we swapped stories and caught up with each other's news in the evening. Sunday morning saw more members joining us and while the children took part in a Mad Science morning - lots of fun and VERY messy.... others heard talks by Dr Syed of Gt.Ormond St Hospital, Helen Young of St.Giles Hospice, Litchfield and an open question and answer session hosted by Professor John Harper of Gt.Ormond St and Head of our Medical Advisory Board. Once again, everyone got so much from the wekend....here is what a couple of families thought of their time with us...
"When Matthew was diagnosed with Proteus Syndrome, it was
stressful and daunting as we had never heard of Proteus Syndrome and
there was limited information available. Professor Harper and Jane
Linward at GOSH told us about the Proteus Family Network U.K."
Secretary: Jean Harrison, 10 Overhill Road, Weeping Cross, Stafford, ST17 0QA
01785 661263, email@example.com