• 0 The People's Projects Please Vote for Amy and Friends

    • News
    • by Administrator
    • 13-04-2018

    The People's Projects gives you the chance to decide how National Lottery funding can make a difference in your local community. The projects are revealed! Voting opens at 9am on Monday 16th April 2018. A share of up to £3 million of National Lottery funding is up for grabs. With 95 organisations shortlisted across the UK, we want you to vote for the projects you would like to receive funding. Groups are competing for up to £50,000 of funding to improve the lives of people in their communities. Please Vote for Amy and Friends by clicking the image below remember voting doesn't open until 9am Monday 16th April 2018, Thankyou!

  • 0 Worldwide Afternoon Tea

    • News
    • by Administrator
    • 21-02-2018

    PLEASE SHARE.....Can you believe it’s nearly March! Just a reminder that our worldwide afternoon tea takes place on 2nd June 2018. We are extremely happy that so many of you are taking part! If you are also interested - all you have to do is hold an afternoon tea party/we will send you some of our leaflets and you can help raise awareness and money to help our children and families ❤️ Thank you for helping us to ‘make a BIG difference to little lives’ ❤️

  • 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

 



 
 
Privacy Policy - Cookie Policy - Terms & Conditions