52 Weeks - 52 Charities

#46 – Amy and Friends

Amy and Friends

Amy and Friends is a special organisation that supports not only patients and family of a rare condition called Cockayne syndrome, but also provides knowledge and awareness about this rare condition to medical professionals across the world.
Based in Oxton on the Wirral, the charity was created for Amy Hughes whose diagnosis was so uncommon it wasn’t confirmed as Cockayne until she was 15 yrs old. Amy’s Mum & Dad, founders of the charity are keen to point out that although Amy became an angel in January of this year at 28, the ongoing support and advice offered by the charity is still vitally important in order to secure the right diagnosis, advice and support for parents and professionals as quickly as possible in order to make each day count for each patient.
Cheshire Freemasons were delighted to be asked to support the charity and proud to make a donation in order to help them in the great work they are doing, and in memory of Amy.

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