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STURGE WEBER UK APRIL 2013 “It’s not just a Birthmark” Charity No: 1016688 DEAR EVERYONE, Contents This year we are extending our Family weekend and we will be staying an extra 1 Dear Everyone night which will give us all more time to socialise. We are starting earlier on 2 My First Half Marathon Saturday with registration from 11.00am. 3 Tall Ships Since the last Family Weekend the online shop has been set up with the latest 4 Tour de Rye & Romney additions being the Sturge Weber Bear and the Single “More than Just My Little Marsh Girl” (the words written by Stephen, Angelina’s dad and the music arranged and 5 The Sweet Taste of Success performed by Warren Polydorou). Fundraising Strawberry Tea We now have over 300 members on our Sturge Weber UK Facebook page which is 6 very active. Give as you Live Twitter Since the last Newsletter Jayne came up with the idea of two bears “Beartrice” 7 From a Fathers Heart and “Beartie” who travel the world to raise awareness of Sturge Weber. They have 8 Family Weekend certainly travelled to some exotic places. They have their own Facebook and Twitter Conference page and Jayne has written about their holidays in this issue. 9 Christmas Fayre We hope you enjoy the stories and articles in this newsletter and I would like to Collection Boxes thank everyone who has contributed. 10 Annie 11 Recycle Your Old Printer We look forward to seeing you all again in October. Cartridges 12 Beartie & Beartrice Best wishes, 13 Christening Jenny Facebook 14 Family Fun Day In Memory 15 Golf Day Townswomen's Guild 16 Hallie's Story 17 Pre Christmas Party Keighley's Message About Kerrianne Can I tell youAbout Epilepsy 18 Identity and Passport The Next family weekend conference Service Peterborough 19 NHBC Golf Day will be spread over 3 days Personal Independence Payment 26th - 28th october 2013 20 Keppra Kid at the Hilton Hotel, Warwick 22 Major Series North 23 Runnerbean Tomcat Twisters 24 Sturge Weber Store 25 SW Summer UK Family Fun Day 26 Tash For Cash 27 Rachel's Skydive 28 Thank Yous Useful Contacts At times I really didn’t feel like going out to run, but I just My First Half Marathon kept reminding myself of a couple of things:- - Hallies beautiful smiling face. Despite everything she has been through in her first year she seems to be rarely without a smile. - Graham training at silly hours of the day. and finally - how thankful we should all be for our good health. I am a relatively healthy individual and I really have no excuse to sit on the sofa feeling sorry for myself. Before I knew it the race week was upon me. I knew I could do the distance, it was just a matter of how long it would take. I woke up on the morning of Sunday 10th Feb, to sleet, snow and a temperature of -2. Conditions were far from ideal for a first half marathon. Once I started running I stopped noticing the cold, my spirits were lifted greatly by support from Cathy and Alistair Davidson (Hallies Grandparents ) who kept popping up at various points around the race. At 11 miles my legs really began to suffer from the cold. I finished the race in 2 hours and 15 minutes, I guess not bad for a first attempt , in what I have heard is the second toughest half marathon in the country. I was inspired to run my first half marathon, by Graham Davidson (my husband’s cousin) who has signed up for a Half Iron Man event and was training hard. On reaching my 40th birthday ( so I guess a mid life crisis) I began to realise if Graham could make time to train for such a gruelling event, in amongst caring for his family and dealing with Hallie’s condition, I really had no excuse. Four months ago I was asked to design a t shirt for the Liversedge Half Marathon. I came up with a design based on the route map, as I was drawing the route, it dawned on me, with a little hard work I could train to run the race. So I had my inspiration, a race to run and it only seemed right to try to raise money for Sturge Weber UK. Hopefully to help out families such as Graham and Rachael Davidson. The preparations and training was pretty difficult since it ran through November to February. I had to fit training amongst Christmas festivities, ice, snow and dark evenings. It would seem that I was not the only one of Hallie’s relations running the race. Some half an hour ahead of me was Hallie’s other Grandad (David Needham) who some years my senior, finished the race in much less time. I felt a real sense of pride finishing the race, but even more so completing the three month training programme. The icing on the cake is to have raised some money along the way (£491), which I hope will prove helpful to Sturge Weber UK in the future. It is now the turn of my husband (John Hughes) who similarly has been inspired by Graham and his family, to train for the Castles Triathlon in July. He will also be raising money through Just Giving. Yvette Hughes 2 Sturge Weber Newsletter Tall Ships - Sailing Adventures for All Lord Nelson Tenacious Join JST Tall Ships and sail with the Jubilee JST subsidise the costs on every voyage to Sailing Trust (JST), a registered charity make their tall ship adventures as affordable that owns and operates Lord Nelson and and inclusive as possible. They also offer Tenacious. These are the only two tall ships in extra bursary funding and fundraising advice the world designed and built to enable people for those individuals who might struggle to of all physical abilities to sail side-by-side as afford the full voyage cost. equals. Since the charity started in 1978, over 36,000 Tall ship sailing holidays with the JST people have sailed with the Jubilee Sailing provides everyone the thrill and adventure of Trust. Over 24,000 of those have been on life at sea and you can be involved in almost Lord Nelson , which was launched in 1986 every activity on board. Take the helm, set and 12,000 have sailed on Tenacious which the sails and keep watch, all regardless of was launched in 2000 – the largest wooden your physical ability and previous sailing hulled tall ship of her type to be made since knowledge. the end of the 19th century. http://www.jst.org.uk 3 Sturge Weber Newsletter and meet him at various watering points for a much needed gulp of water and encouragement. There were feeding points at Camber, Lydd and Old Romney where some riders Each year for the last who were doing the 25km ride turned back. At the Oasis 6 years the Rye and café the run split and the 100km riders proceeded towards Winchelsea Rotary Hythe. Neale, together with the 50km entries, made their Club organise a Fun way back to Rye via Appledore and the Canal Road. Mum, Run rather grandly Max, Brenda and I sat in the Autumn sun outside at a nice called the ‘Tour café in Appledore and waited to cheer the riders as they de Rye et Romney passed through on the final leg back to Rye. Marsh’. In September 2012 my brother The long distance riders included many seasoned cyclists Neale decided to take but they were supplemented by a few brave souls who part and very kindly were doing the 100K with little previous cycling and were chose Sturge Weber suffering badly when they eventually came in sight of Rye UK as his nominated as they approached on the Military Road. Neale had put in charity. a lot of training prior to the event and finished the 50km in good shape. Despite the weather forecast the day dawned bright and clear. A record entry of about 150 set off to get to Hythe Medals were given to every rider who completed the and back (100km/63 miles) and gain a commemorative course. Neale presented his medal to Max. medal. Neale selected the 50km distance and there were Many riders were sponsored, and thanks to the enormous shorter rides for the less fit and for younger riders. There generosity of Neale’s sponsors, he raised over £1500 for were lots of very young riders accompanied by parents Sturge Weber UK! Thank you very much to Neale and to or siblings and marshalled by volunteers. It was a very his sponsors! friendly, relaxed event. Antonia East Rye Town Crier, Rex Swain, set the ride in motion with his traditional cry of “When I ring the bell, go like hell!” Riders set off in groups at intervals between 9 and 10am and were soon wending their way towards Camber on the bicycle path. Riders came in all shapes and sizes, young and old, rich and poor. Me, Max, my mum and my aunt Brenda all piled into the car to follow Neale along his route 4 Sturge Weber Newsletter The sweet taste of success On Saturday 13th October 2012, Jodie Brown, her dad Charlie and Jane Howard Set up a cake and card stall at Hertford Food Festival, to raise some money for Sturge Weber UK. Everything we raised, we got doubled by DHL. We were given a free stall by the events main sponsor Waitrose, and with cakes from friends and made by ourselves, we sold everything we had.
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