Jacquie, who lives in Grays, came along to the Connections meeting in Cambridge to meet families and already feels she has made friends with many of those attending..

"I was a bit nervous going to the meeting but I was so glad I did. It was really great to meet families and the doctors and start learning more about the syndrome."

Prior to joining the Foundation, Jacquie worked for a financial services company Wrightsure who have been great supporters of CdLS with a golf day, marathon runners and the services of trustee Graham Chinn. Before that she worked with a legal firm.

Jacquie is married to Tony and they have a daughter Alison at university in Leeds.

Jacquie will be responsible for the day-to-day administration of the Foundation and helping families and professionals find the right information and assistance.

Chairman Alan Peaford said "We are delighted that somebody of Jacquie's calibre will be working with us. It has taken time to find the right person to help us with the growth we have within the Foundation. With support from the Big Lottery and from the families fund-raising efforts we have been able to make this step to improve the level of service families receive from the information."

Jacquie is at the office Tuesday to Friday.