• 0 GenIDA, an online study for CS patient and families.

    • News
    • by Administrator
    • 04-09-2017

    GenIDA, an online study for CS patient and familiesThe GenIDA project is a cohort study for genetic diseases whereby clinical information is entered and updated by the family themselves. The aim is to collect medical data to help gaining better knowledge on the evolution of the disease over life. This is extremely useful in Cockayne syndrome research because of the low frequency of the disease and the geographical dispersion of the patients.Two online questionnaires allow providing and updating the relevant health information: a CS specific questionnaire (15 questions) and a main questionnaire (46 questions).  The data is kept anonymous and are stored on secured servers hosted in France. Anonymous summary of the data will be publicly available for families and for health care professionals. We hope that these novel and medically significant knowledge can be translated in improved healthcare and that this e-cohort will favour international clinical studies the more regular participants, the more informative will be the results. https://genida.unistra.fr/  

  • 0 Our new Patron Jayne O'Gorman

    • News
    • by Administrator
    • 16-06-2017

    We would like to introduce you all to our new Patron Jayne O'Gorman. Jayne has undertaken many different projects for charities and has raised a phenomenal amount of money. Jayne is organising a ball on 7th July at Chester Grosvenor to help Amy and Friends and she is doing her best to make people aware of Cockayne Syndrome. Jayne is Managing Director of Azurecollection.com We're so happy to have Jayne on board.

  • 0 Ella's Sponsored Mount Snowdon Climb

    • News
    • by Administrator
    • 29-05-2016

      We also have wonderful volunteers running, zip-wiring, entering Tough Mudder and our very own Ella Barden who suffers from Cockayne Syndrome climbed Snowdon with family and friends.

  • 0 Team Amy and Friends completed Tough Mudder

    • News
    • by Administrator
    • 19-09-2015

      Team Amy and Friends completed Tough Mudder - you guys are amazing!

  • 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 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!!