Sturge Weber UK NEWSLETTER SEPTEMBER 2017 Dear Everyone, Contents This is a bumper newsletter as I didn’t produce one 1 Dear Everyone in the spring this year due to family health issues and 2 Scottish Day spending so much time in hospital. 100% to Sturge Weber UK 3 Sturge Weber UK Chair Report 2016 It’s almost a year since our last Family Weekend 4 Skincare after Laser Treatment Conference. You can read all about the last one inside Broxbourne District Rangers this issue. 5 Sam's Story I would like to thank everyone who has contributed 6-7 The Eye in Sturge Weber Syndrome articles, stories and have written about their fundraising 8 Sturge Weber UK Online Store events for this newsletter. I hope you all enjoy reading 9 Brain Surgery reduces Seizures Calendar it. 10-11 Treasurer’s Report Fundraising T Shirts 12 Giving Page Contact a Family Best wishes, 13 Sturge Weber Syndrome Family Day Jenny 14-17 Family Weekend Conference 18 Frances's Funday Darlington Community Carnival 2017 19 Chloe's Story 20 Raising Awareness for Sturge Weber in Italy Connie’s 90th Birthday 21 GOSH Team Workshop Joy’s 70th Birthday 22 What are the different types of Sturge Weber Syndrome? Sturge Weber UK Mummies Respite Weekend 23 In Memory The Family Fund 24 We need your help Cerebra Lending Library 25 Hallen Village Hall Charity Night 26-27 Sturge Weber Family Weekend Summary Sturge Weber Awareness Day 28 Caity’s Progress Frances Phillips July 2016 Fundrasier 29 Channelle’s Story 30 What’s that on your face? 31 Raising Money for Sturge Weber Syndrome Grannie’s Promise 32-33 Petty Pool Me and My Face 34 Beautyzone Salon Sturge Weber UK Christmas Cards 35 Christmas Cards 2017 Order Form 36-37 Sturge Weber Away Day 38-39 Melissa’s Story Independence Equipment 40 Fundraising - Collection Boxes 41 German Sturge Weber Family Weekend 2017 42-43 Sturge Weber UK Family Weekend Conference 2018 44 SVB UK Three Peaks Challenge Family Weekend 45 Who can claim Carer's Allowance In Memory of Warren Van Oestren 5th, 6th2018 and 7th May 46 Friends in England 47 Sturge Weber UK Facebook and Twitter pages 48 Thankyous Scottish Day 2016 We arrived at the lovely Glasgow Hilton Hotel for our first Scottish Sturge Weber meet. I was a bit nervous as to how the day would go but after being in the room with so many wonderful people I realised there was nothing to be nervous about. The day went along amazingly. I was one of the last to arrive and everyone was chatting away to each other. Some people already knew each other and for those that didn’t know anyone they left with friends. There were all different ages of people with Sturge Weber syndrome, so many different birthmarks and so many different stories to be told and heard. After a quick settle in we all headed to the restaurant for a lovely lunch together. After that we were back to the conference room for the young ones to play with the soft play provided and for the older folks and parents to get a good chat with a coffee. Peter was on hand to take pictures of the day and was lovely to chat with and his snaps were fabulous. People travelled from all over. One family even came from down south to meet everyone. To see how Sturge Weber affects in so many different ways was unbelievable. For myself I personally felt positive, meeting and chatting to everyone reassured me that no two cases are the same and that everyone deals with it differently. Having spoken to many parents on the Facebook page it was a delight to meet in person and also meet their loved ones who suffer from the syndrome. Everyone enjoyed the day, the kids had a great time and enjoyed the balloon maker near the end. I left with new friends and so did Adam. I am very looking forward to another meet up to have this experience again, thanks to everyone involved in the setup of the day, Peter for pictures and to everyone who made it along. Wendy Harkins (Editor’s note) The next Scottish Day will be held on 24th September 2017 at the Hilton Glasgow. Jenny has contacted everyone in Scotland on the mailing list via post, e mail and on FB. If you would like to attend please e mail [email protected] 100% to SWUK! My Mum and Dad – Beverly and Ivan Massingham have been supporting SWUK since I became involved in 2012. My Dad retired from the building trade in 2015 and started to take up wood turning as a hobby. Throughout the year he produced many items from fruit bowls to children’s toys and when friends and family saw what he was able to make the orders rolled in. In the summer of 2016 my mum decided to have a stall at the Methodist church fete in her town of Sheringham Norfolk, selling some of the items my dad had made as well as some knitted items made by herself and her sister Pauline. All money raised through sales to SWUK! It was a really good day and many people asked about the charity and how Angelina had been affected. £95.00 was raised and many more orders came in! In the autumn she had another stall, again at the church in Sheringham and raised a further £80.00. In December Tesco in Sherigham gave permission to have a stall there. The wooden snowmen all sold within an hour and by the end of the day the table was just about empty. £353.11 was raised. Mum has booked to have another table at the end of this year at Tesco so Dad has been working hard and hopes to have enough snowmen to fill it. Lisa Massingham 2 Sturge Weber newsletter will be used for research purposes, to increase their STURGE WEBER UK understanding of SWS and to develop and enhance Chair Report 2016 management of the condition in the longer term. The At last year’s Family Weekend Conference we summary of this study was included in the August celebrated the Charity’s 25th Anniversary at the newsletter this year. Hilton Warwick. This year we are holding our We are also funding a research study evaluating conference at the Hilton Coventry as this hotel has cerebral perfusion in twenty patients with SWS at more interconnecting bedrooms to accommodate GOSH. The primary problem underlying SWS is an families. The weekend has again been extended to abnormality of venous blood flow within the brain. include Monday for those wishing to stay longer. This leads to a lack of delivery of blood (perfusion) As one of the Charity’s aims is to raise both public to the brain tissue with areas of damage which can and professional awareness of Sturge Weber then cause seizures and also weakness of the limbs syndrome, this year it will the Charity’s fourth like a stroke. Awareness Day on November 1st the date of the We appreciate all the effort and challenges families birth of Dr William Allen Sturge. As the Family take on raising money so the charity can support Weekend is so close to our Awareness Day, it’s an projects. Without fundraising events the charity excuse for the children have a balloon race on the would not have been able to have funded the two Monday morning. The furthest one of our balloons studies above last year at GOSH, costing £39,000 has reached in a previous year is Northern Germany. which will benefit those who have SW syndrome. I attended an Away Day on the 30th June 2016 with Many of you may already know Ashley Ide has written Dr Sarah Aylett and the team from the Sturge Weber the text for a book called, “What’s that on your face”. Clinic at Great Ormond Street Hospital. This is about a boy called Mikey with a Facial Port Mark Heathfield gave a presentation about the Wine Stain (Birthmark) inspired by his son Ashton questionnaire sent to families regarding the and his struggles. He aims to educate five to seven feedback on how helpful the emergency care plan year olds that everyone is unique in their own way. I had been. The total returned was 34%. They were recently met up with Ashley and Jo, the Illustrator, at only sent out to the families attending GOSH. The Dartprint printers in Tavistock to watch the various feedback was very positive and families found stages of the production of the book. The book will them very helpful when they attended appointments be launched at the Family Weekend 2016. Ashley in their local area. The charity originally asked has signed some copies so one can be given to each GOSH if they would produce these care plans in family at the Family Weekend. Sturge Weber UK 2012/2013, so it was good to hear that they had has funded this project and Ashley would like all the been advantageous for families. profit from the sale of the books to go to the Charity. Dr Sarah Aylett presented the Database progress Unfortunately we won’t be selling Christmas cards and an update of the Perfusion Study. this year. We are hoping to do so again next year if Regarding the study into the benefits of taking we can find a printer to print them at a reasonable aspirin, Sarah said that this may be a problem cost.