The committee have the job of keeping the CdCSSG running. We meet four times a year, and have subcommittees for the family weekends, research, website, and so on.
We always need new blood, so if you'd like to join the committee, please email firstname.lastname@example.org.
"I've been a member of the support group since our first family weekend in 2009, and recently became chair in 2016. I'm normally to be found in Sussex with my lovely daughters Amelia (who has CdCS) and Jessica. I'm always looking at how we on the committee can serve our families better, so if you have any thoughts, let me know any time!"
"Hi, I live and work in Oxford in Clinical Research. I have a boy, Matias, with Cri du Chat Syndrome. He is wonderfully happy but lazy. He attends the local special needs school, Mabel Prichard, where I am the Chair of the Governing Body. It is a wonderful school, full of life and learning. I really enjoy spending time there, interacting with the teachers and children. As such I would recommend to all to become involved with their child's school. On the committee of the charity, as well as looking after the finances, I am somewhat of an advisor on all things scientific. I try to ensure that what we say and recommend is recognised as effective and is based upon good evidence."
"I am the administrator of the group and have been since 2008. My favourite time of the year is organising the family weekend and love meeting all the new families - as well as the familiar faces. Don't hesitate to contact me if you have any questions or just want to get in touch with other families in your area."
"Osteopath, coordinator of the research sub committee and clinical advisory group, and delight in having Cicely as a daughter. Like a laugh and a beer at the end of a long family weekend, especially if I have been conned into speaking."
"Hello, I am Jamie. I live in Liverpool with my wife Amy and three children, Harry, Poppy & Toby. I was born in Suffolk but University took me to the North West. Amy is a G.P. in Lancashire. I taught PE & RE in a secondary school in South Manchester for 10 years, I then took 2 years out to complete a Theology and Pastoral studies degree and have now returned to teaching RE, part time, at a school in Liverpool. Amy and I found out that Poppy had CdC shortly after our 20 week scan which gave us lots of time to think, plan, cry and cry some more before she arrived on 5th Oct 2012. I joined the Committee in 2013 after attending the Annual Conference in Chester. We really appreciate the CdC family support network. I want to help and support other families, particularly those who are just starting out on their journey with CdC. As fundraising co-ordinator I want to encourage and support you, your family and friends to be creative as we raise money to support one another on this unique journey that we find ourselves on."
"Hey, I'm Heidi and I live in Gloucester with my husband Adam, 2 step children and my 2 beautiful children Ashleigh-May and Korban. My son Korban was born 6th August 2013 and was diagnosed with CDC at 4 weeks old. He is an absolute character and I could not imagine my life without him. He can wrap anyone round his little finger. I joined the committee after my 2nd family weekend. I wanted to be able to give a little something back after the big family that we are was such a big part of my life. If I can help in anyway please do come to me."
"Hello my name is Louise and I live in Dorset. I am Mum to Patrick who has CDC. He is 13 years old now. He was diagnosed at 9 months old after not reaching his developmental milestones. It was a huge shock as you can imagine and probably know too well. None of the professionals could tell me anything about what the future might hold; most hadn’t even heard of Cri du Chat let alone seen a child with the condition. The support group has been amazing and has opened not only my eyes but my family’s eyes too. There is a future and it can be a happy one. When Patrick was 4 I gave birth to Eleanor who is now 9. She doesn’t have CDC and is wonderful with her brother even though they fight like all siblings do. Patrick attends a special needs school and has done since he was 4 years old. He loves it and will continue to attend until he is 19. I work 4 days a week as an apprenticeship assessor."