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Sue Lewis-Jones

Sue’s middle son was born with OA/TOF in 1983. Her involvement with TOFS started the day she learned of its existence when he was nearly two. Sue was one of our first Trustees when TOFS became a charity.

A retired teacher, she works on several sub-committees. As an admin on the TOFS Facebook group, Sue helps inform members and guide them to the right information.

“Finding out about TOFS had such a huge impact on me. I felt overjoyed to meet other parents of children born with the condition and wanted to find out more, be involved and share information. I have learnt so much over the years, both through personal experience as a mother and from the many specialist medics who have shared their time and their knowledge with TOFS. Remembering the relief I felt in those early years, and the desire to help pass it on is the reason why TOFS is still so important to me.”

Sue Lewis Jones
Sue Lewis Jones