Foundation vice-chairman, Charles Maynard with his daughter Lucy – “I want to help us build the group into a strong support network”.

The Trustees of the CdLS Foundation are your representatives, responsible for ensuring that money raised is spent appropriately and that the Foundation lives up to its promise to its members – in our case, the families affected by CdLS.

All of the Trustees are volunteers. At the Reading family meeting it was suggested that we use Reaching Out to introduce the Trustees to the membership.

CHARLES MAYNARD
– Vice Chairman.

Charles lives in Long Itchington, Warwickshire with his wife Helen, two daughters, Lucy, 8. and Georgina 6, and their son Henry aged 7. Lucy has CdLS.

Lucy was born in 1993. “She’s now eight and is getting on OK,” Charles says. “But she is not walking or talking yet. She attends a special RNIB School because she has very poor sight. But she is getting on. She sleeps well. Following a Nissen Fundoplication she is much happier and feeds herself biscuits.”

Charles and Helen found out about the Foundation through a health visitor and after contacting the office were put in touch with Heather Young.

“We attended the South Mimms meeting where Laird Jackson confirmed diagnosis, and we were able to meet some other families. We then went to the Stratford Conference,” Charles recalls.

At the conference Charles told Heather Young he would be interested in being more involved and despite missing the Stratford AGM he found that, in his absence, Heather had nominated him and he had been elected a Trustee.

Now working for the VW Group in Milton Keynes in Computer Systems, Charles says he was initially concerned about how much time it would take being a trustee. “In the end it takes less time than I feared – maybe I am not doing enough – but we work as a team and take on different responsibilities.

“I see the role of the Foundation as a support network that allows you to talk about different issues affecting CdLS. I want to help build that network.”

Last summer Charles and Helen represented the UK and Ireland at the inaugural meeting of the global CdLS Feder-ation. “It was fascinating meeting people from different countries around the world and realising we are all talking about the same issues. It was a fantastic experience.”

Charles has responsibilities for families in the Midlands area of the UK. He can be contacted on 01926 817939 or on e-mail at charles.maynard@gedas.co.uk