About

I live in Surrey with my husband and our daughter who has just turned three. Georgia was diagnosed with CCHS 20/26 mutation at four weeks old. She also has hyper mobility syndrome.

I am the newly appointed Chair of CCHS UK and I’m very much enjoying leading the strategy for the charity. The most recent change we have made is to add research into our remit.

I have a catering, business and customer experience background at directorship level. When I have a free moment I love baking, cooking and playing tennis.

I live in Norfolk with my husband Chris and our three children Isaac, Louis and Emma (and much-loved Golden Retriever Montie). Emma, who is six, is diagnosed with CCHS 20/27 mutation, and Hirschsprungs Disease. 

I’ve been a trustee of CCHS since 2018, as secretary to the charity. My role includes issuing information to families, acknowledging fundraisers, supporting conferences and looking for new opportunities to enhance the work of the charity.

I also work as a Freelance Arts Consultant and in my (rare) spare time I enjoy running, walking, renovating my new home, reading and relaxing!

I’m Sophie, Mum to gorgeous five-year-old Charlie who was diagnosed with CCHS at six weeks old. Charlie started school this year and is doing brilliantly, but living with this condition can still be challenging at times.

I have recently become a trustee of CCHS UK to help raise awareness and money, and I’m hoping my experience in comms will be a good asset to the team.

In my spare time, I love reading the papers and drinking tea. I also like running, netball and windsurfing, but a ruptured achilles has put a stop to any of those for the time being!