Jayne Hughes

Amy and Friends
Women of Courage - Winner

Jayne Hughes is the CEO of Amy and Friends, a charity supporting children suffering from DNA repair disorders in childhood, and their families/carers. In 2005 Jayne and her daughter Amy travelled to America where Amy was diagnosed with Cockayne Syndrome (CS), after eight years of struggling. The condition has no cure and only palliative treatment. Jayne decided to create something not just to help Amy, but also other families like theirs. The charity holds an annual conference bringing together +300 family members from across the world and 42 scientists/medics to collaborate with research, make diagnosis, and provide help and guidance, as well as offering 24/7 online support, respite for parents/siblings and weekly zoom activities to reduce isolation. In 2019, Jayne set up a rare disease clinic for children affected by CS and related disorders. Sadly, in 2020, Amy passed away, but Jayne continues Amy’s legacy and her wish to help others like her through her tireless work.