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 email@example.com.
"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 as a public health specialist. 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 vice-chair of the governing body. It is a wonderful school, full of life and learning. I really enjoy spending time in the school 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, son Harry and daughter Poppy. I was born in Suffolk but University brought 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 and seeing the great benefits of having a CdC family support network. I want to help and support other families, particularly those who are just starting out on their journey with CdC."