• 0 ANNUAL SCIENTIFIC / FAMILY CONFERENCE 2009

    The third annual retreat took place on the weekend of the 6th-8th June 2009. It was our biggest retreat yet, with families attending from South Africa, Australia, Germany, France, Spain as well as the UK.   We all had an amazing time together and it was wonderful to meet friends old and new and spend time with or thinking about our beautiful children. On saturday we had time to catch up with one another and meet our new friends from around the globe.Each family had an opportunity to have one to one time with our team of medical advisors whilst the children and their siblings were entertained by Professor Paulos who was alot of fun!! Thanks to Mike Povall and Owens Gym for arranging the Professor!! The dads, siblings and friends went out bowling whilst mums and the kids relaxed and chatted at the hotel.On Sunday, we went to the Liverpool Museum for our trip out and had a coach provided to us by Vauxhall Motors - much thanks to them!!     We then had time to ask more questions to the doctors before getting ready for our gala evening. We were joined this year by Wirral Taekwondo who entertained the families with pattern demonstrations, sparring and some board and brick breaking!!!     Also there were Funkstar dance troop!! Jimmy Rae and the band!     We also had alot of help at the event from Marks and Spencers who sold raffle tickets for a hamper and kept a close eye on our butterfly table - thanks to you!! And of course, two of our kids - Amy and Nick got engaged at the event and brought a smile and a tear to so many eyes!!   On Monday we held our remembrance service and the children lit candles for their friends in heaven and also for their new found friends in the group. We then said our goodbyes until next time - and we can't wait for that!!!!! Thanks once again to Jeans for Genes and all the other people who made this retreat possible - you know who you are!!. Further details and pictures from the retreat will be available in our Summer Newletter - coming soon!!

  • 0 Mark Gulvin ran the Windsor half marathon & Jack Longman ran the Hoylake 10k

    • News
    • by Administrator
    • 21-09-2008

    Mark Gulvin ran the Windsor half marathon - he ran 13 miles in an amazing 1 hour 50 minutes - CONGRATULATIONS AND THANKS FROM ALL OF US X.Jack Longman ran the Hoylake 10k also on Sunday - this was his first attempt and how fantastic he was! Approximately 43 minutes and Jack came about 15th out of around 600 runners - WELL DONE, YOU'RE A STAR X

  • 0 With great sadness little Rebecca passed away today.

    • News
    • by Administrator
    • 19-09-2008

    With great sadness little Rebecca passed away today. Click Here for Rebecca's Story

  • 0 Annual Scientific / Family Conference 2008

    The second annual retreat took place weekend 3-5th May 2008. We were joined by both new and existing families and it was a pleasure to see everyone there. Dr. Edward Neilan and Dr. Peter Kang joined us from Boston Children's Hospital, USA, together with Prof. Alan Lehmann and Dr. Vincent Laugel. It is hoped that children from the UK can enter into the existing trial being held at Boston Children's Hospital which it is hoped will alleviate our children's tremors, tightness of muscles and make walking a little easier - things that most of us take for granted. We will continue to raise money to enable this to happen. Meeting each other on the first day was like meeting up with your long lost friends and for the children - some of whom had never met another child like them this was an indescribably amazing feeling.  They reached out to each other with love, hugs and huge smiles - priceless.We enjoyed taking time with the doctors, then on to bowling for Dads and siblings whilst mums, grans, aunts and uncles stayed with the children having some catch up time.On Sunday we enjoyed our trip on the Mersey Ferries - thank you to Happy Days for organising this and also to the Ferries staff. On Sunday evening our gala event was incredible.  We were joined by Family Martial Arts who put on a display for us, Irish dancers who were wonderful and then by Jim and Zita from Slapdash - your voices are fabulous and you entertained us and made the children have a fantastic time dancing along and laughing all night. On Monday we held our remembrance service and the children lit candles for their friends in heaven and also for their new found friends in the group. We then said our goodbyes until next time - and we can't wait for that.Special thanks to Jim Mulholland for organising such a wonderful night and to everyone else - too numerous to mention - who helped us - you helped create a weekend that will never be forgotten and we for this we thank you.

  • 0 Somerville Primary School 'Mad Hair' Day raised £200

    • News
    • by Administrator
    • 20-03-2008

    Amy is pictured here receiving a cheque for £200 from Hannah and Jake who are pupils at Somerville Primary School. They held a 'mad hair' day in which pupils came to school with a variety or colours and hairstyles! Thank you children for doing this and for also inviting us to your assembly so that you could learn more about Amy and Cockayne Syndrome.

  • 0 CSA in Birkenhead raised £578.90

    • News
    • by Administrator
    • 29-02-2008

    Amy went to the CSA in Birkenhead to pick up a cheque for £578.90 in respect of a cake sale day they held. A BIG thank you to all of those who helped out and to Tracie for organising the event. Cheers, Jayne x

  • 0 Jayne Hughes and Penny Dear attended the House of Commons

    • News
    • by Administrator
    • 27-02-2008

    Jayne Hughes and Penny Dear attended a reception held at the House of Commons on Tuesday 26th February. This was held in connection with Genetic Interest Group, MP's and scientists hoping to bring "centres of excellence" to the UK for many rare disorders including CS - the centre of excellence being developed at St. Thomas/Guys Hospital, London. Further information on this will follow in due course.

  • 0 Good news from Dr. Peter Kang

    • News
    • by Administrator
    • 24-01-2008

    Good news from Dr. Peter Kang - his paper has been accepted and the story of Amy is to be published in summer 2008!!

  • 0 Wallasey Swimming Club raised £942.50

    • News
    • by Administrator
    • 16-01-2008

    January 2008 - We are pleased to confirm that Emma Jones and the Wallasey Swimming Club raised a huge amount of £942.50 and this is received with our thanks. Five huge kisses are being sent up to heaven for 'Little Man' who passed away 16th January 2008. For legal reasons he cannot be named but his wonderful guardian is in our thoughts for the love and care you showed him in his short life of 5 years. London UK. X X X X X

  • 0 Wallasey Swimming Club Sponsored Swim

    • News
    • by Administrator
    • 02-12-2007

    CASH is rolling in for plucky Amy Garton-Hughes who is making medical history in her battle with Cockayne Syndrome. On Sunday, teenagers from Wallasey Swimming Club splashed out to help the 16-year-old who is baffling doctors with her spirit and determination. Amy's good friend Emma Jones raised over £200 after completing a sponsored swim at Guinea Gap Baths in Seacombe. And money is still coming in from other members of the club with all proceeds to registered charity Amy and Friends. Support continues to mount to fund research into the rare disease and Vauxhall, Unilever and Sony are now on board. Globe readers have also pledged donations to help Amy receive groundbreaking treatment and after just one course of new physiotherapy, she is walking with her back almost straight. Her hearing has gone from moderate loss to mild and mum Jayne says her well-being and contentment is much improved. The very first CS Christmas party to bring together UK families will take place this weekend. To donate, send your cheques made payable to Amy and Friends, c/o Wirral Globe, Haymarket Court, Hinson Street, Birkenhead, CH41 5BX.

 



 
 
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