• 0 Upcoming Events

    • Events
    • by Administrator
    • 08-11-2017

    3rd February 2018 - Amy and Friends proudly presents our 3rd Annual Awards Evening - Village Hotel Bromborough 7pm - late Tickets available £35 per person featuring Take@That and Dan Budd as Robbie Williams.   13th-15th August 2018 - Amy and Friends Annual Conference - Carden Park Hotel. Families who have a child/young person with CS/TTD or other related disorder are very welcome. Please complete the Registration Form 

  • 0 The One Show’s Rickshaw Challenge

    • Events
    • by Administrator
    • 23-10-2017

    About The One Show’s Rickshaw Challenge On 11th October, The One Show announced the return or the Rickshaw Challenge with a new team of riders and brand new route across. This year’s team will pedal an epic 500 miles to raise money for BBC Children in Need, and in a first for the challenge, the team will embark on their journey from London, riding north to Glasgow. Ben, 16, has been chosen from Amy and Friends!! He is from North Wales and he currently helps to care for his older sister, 26, who has Cockayne Syndrome (CS). This is a condition that gets progressively worse. Amy & Friends is a project started by their mother. BBC's Children in Need funding has enabled the project to support others affected by CS.           The team of six, all of whom have been supported by BBC Children in Need funded projects, will push themselves to the limit, battling steep hills and braving the elements in the hope that their efforts will help them raise as much money as possible – all of which will go on to make a difference to young lives across the UK. Cycling alongside the team once more is The One Show’s Matt Baker, who will go on the road offering support and advice throughout the journey, whilst co-presenter, Alex Jones, follows their every move and cheers the team on, live from the studio. Setting off on Thursday, 9th November from The One Show studio at New Broadcasting House in London, Team Rickshaw will work their way across the UK in a bid to cross the finish line in Glasgow on Friday 17th November, during BBC Children in Need’s 2017 Appeal Show. To date the challenge has raised £16million!  If you would like to support Ben and his fellow team members - they would really appreciate seeing you! The route is as follows: The route is as follows: • Day 1 ​– 9 Nov ​ New Broadcasting House, London to Pinner• Day 2 ​– 10 Nov​ Pinner to Banbury• Day 3​ – 11 Nov​ Banbury to Cannock• Day 4 ​– 12 Nov ​Cannock to Salford Quays• Day 5 ​– 13 Nov​Salford Quays to Morecambe• Day 6​ – 14 Nov ​Morecambe to Penrith• Day 7 ​– 15 Nov​Penrith to Hawick• Day 8​ – 16 Nov​Hawick to Edinburgh• Day 9 ​– 17 Nov ​Edinburgh to Glasgow   About BBC Children in Need BBC Children in Need’s vision is that every child in the UK has a safe, happy and secure childhood and the chance to reach their potential. The charity will realise this vision by supporting, promoting and publicising work that addresses the challenges that children and young people face and work that builds their skills and resilience. BBC Children in Need is currently supporting over 2,500 projects in communities across the UK that are helping children and young people facing a range of disadvantages such as living in poverty, being disabled or ill, or experiencing distress, neglect or trauma. This year BBC Children in Need’s appeal show will be broadcast live on BBC One on Friday 17th November. About Amy and Friends & BBC Children in Need Funding BBC Children in Need funding has meant that families impacted by Cockayne Syndrome, a rare progressive condition, are not alone. The charity helps provide a support worker who can give information, practical advice and emotional assistance, as well as a weekly siblings club, for the brothers and sisters of young people affected by CS and ANY other life limiting/severely life affecting issue. The organisation was started by Jayne Hughes, who founded it after her daughter, Amy’s, diagnosis.

  • 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 Annual Scientific / Family Conference 2015

    Our annual family/medical conference took part in September - this year we added a scientific conference and doctors/specialists attended from across the world to form a cohort team working together to further advance research.        

  • 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 ANNUAL SCIENTIFIC / FAMILY CONFERENCE 2014

    Our 8th Annual Retreat took place 3rd - 5th October 2014

  • 0 ANNUAL SCIENTIFIC / FAMILY CONFERENCE 2013

    Our 7th Annual Conference