As Founder of Amy and Friends in honour of her own daughter Amy, Jayne continues to be a voice for parents all over the world fighting for children with incurable Cockaynes Syndrome (CS). Jayne’s continued efforts to raise awareness for CS as well as her drive to bring families of CS kids together are a daily effort and are done with sincerity and love.
Her greatest legacy will be the Amy and Friends Family Conference, whereby fundraising throughout the year allows families from all over the world to come together to offer each other much needed support and talk to CS specialists about research development. With less than 300 children in the world with CS, Jayne continues to fight not only for her own daughter Amy, but also for other families of children with this fatal syndrome. CS is a world filled with sadness, death and grief but Jayne has never let it impact her faith, spirit or drive and is an amazing ‘Mum’ not only Amy but all the CS children, she brings light into what is a dark time.