Welcome to Amy and Friends, supporting children/young people/families/carers suffering from DNA repair disorders in childhood, including Cockayne Syndrome (CS), Trichothiodystrophy (TTD). Our mission statement “We are committed to improving the lives of individuals affected by DNA repair disorders in childhood, with compassion and through a family centred approach. With our network of dedicated staff, volunteers and expert medical professionals, we provide practical and emotional support, information, and education whilst promoting and engaging with groundbreaking research in the UK and internationally”.
Who are Amy and Friends?
Amy and Friends was formed to support children/young adults and families suffering from Cockayne Syndrome and linked DNA repair disorders. We meet with families and specialists to share experiences, knowledge and to gain support from each other. We organise and accompany families when attending Rare Disease Clinic at Guy’s and St. Thomas’ NHS Foundation Trust and we actively take part in research programmes, working closely with a team of worldwide medical specialists.
We organise for families to meet others in similar situations to themselves, often for the first/last time. This helps lessen isolation, builds confidence, aids wellbeing and improves knowledge. We provide anticipatory grief and bereavement support, working in partnership with Love, Jasmine.
What We Do
- Amy and Friends provide 24/7 support via an online private forum.
- Weekly we provide home visits to families, giving parent/carers/siblings some vital respite. We also run a variety of online sessions including, wellbeing/relaxation, meet/chat, and counselling. Family fun activities – sending out activity packs, care packages, and obtain specialist equipment and wishes from outside organisations.
- Twice monthly we organise transport and an overnight stay for families who are attending the Rare Disease Centre in London. We accompany 10 patients and their families who are seen each month. Families who require financial support should contact us. For further information please click here.
- Annually we host a family/medical conference, providing support, specifically designed activities, that cater for each family member and their specific needs. Clinicians and scientists come together from across the globe to meet families, provide information on up to date research and existing studies. For further information please click here.
- We continually take part in research programmes across the world, this enables scientists and clinicians to improve their knowledge of DNA repair disorders. We have been instrumental in providing information towards medical papers, developing care plans, leaflets and specific growth charts.
“Every cloud has a silver lining. The silver lining to Dotty’s CS diagnosis is definitely Amy and Friends. A full day of hospital appointments in London and they were on hand with entertainment, food, delicious coffee and support. After visiting the Queen and Hamley’s, what was their favourite bit? Wheelchair races and painting in the hospital. Because of Amy and Friends we got to meet other children with CS and TTD. No words needed, just holding hands and sharing smiles.”
If you would like to make a donation you can do so by clicking this link.
Registered address: Amy and Friends, OCC, THE BOWLING GREEN, VILLAGE ROAD, OXTON, WIRRAL CH43 5SR, UK.
Office address: Amy and Friends, Clwt Yr Arian, Y Nant, Eryrys, Denbighshire, CH7 4DJ, UK.
