Amy and Friends is a national charity that supports children and their families living with life-limiting genetic disorders and rare diseases – including Cockayne Syndrome and Tricothiodystrophy.
The charity provides advice, support and medical information for families including help to source medical equipment that can lead to safer and more fulfilled lives.
Amy and Friends also holds weekly sessions for siblings of children affected by a life-limiting or life-threatening illness, as well as an annual event where families can meet and learn from medical professionals. This reduces isolation and aids medical research.
The charity supports teenagers like 15-year-old Laura who has a big sister with Cockayne Syndrome. She spends a lot of time caring for her sister and helping her throughout the day, but has received a lot of support from Amy and Friends.
Laura said: “Attending My Time To Be Me gives me some time to myself to have fun and spend time with friends I have made, I learn many new skills and enjoy having fun and educational days out.
Global’s Make Some Noise is proud to support the charity’s Family & Sibling Support Worker, to provide information, support, advice and respite to families of children diagnosed with Cockayne Syndrome and Trichothiodystrophy, and siblings of children with other life-limiting or life-threatening conditions.
The Family and Sibling Support Worker will be able to connect families with other organisations – this can be a huge relief for families when attending medical appointments to know they have someone with them who can offer support.
With your help, we can support Amy and Friends and many more charities across the UK.