CdLS youngsters are keen to get their hands on the cheque from supporter Geoff Thomas.

Once again the London Marathon was the largest fund-raiser for the Foundation with more than £5,000 being raised by runners.

The Flora Ladies fun run in Hyde Park also added to the total with almost £2,000 raised by participating mums and sisters – this was a new event for the Foundation.

The British Association of Communicators in Business raised £3,000 from its annual golf day and awareness from this event encouraged one of the Association members to recommend CdLS to its company’s charity board who made a donation of £5,000 to sponsor the launch of a CdLS UK website.

A number of supporters of the Foundation organised other fund raising events and the Foundation would like to thank the following families for their outstanding efforts: Brown, May, Penney, Burgess, Dickens, Bryce, Riley, Peaford, Whitley and Young.

The Foundation depends on the fund raising efforts of its supporters to enable it to continue to offer the services it does.

Awareness was improved by the local activities of families. Show business personality Miss Bonnie Langford, continued to support the Foundation both financially and as an ambassador for the condition.

Radio 5’s Jo Sale supported the Foundation in a charity edition of Ready Steady Cook.

The Foundation remains committed to the goal of the national Rare Disorders Alliance and has worked with Contact-a-Family in lobbying activities to raise awareness about the role of carers and rare genetic conditions.

Foundation chairman Alan Peaford was part of a CaF group that met Health Minister Yvette Cooper in Whitehall to lobby on behalf of the Foundation.

The Foundation and its Scientific Advisory Council takes every opportunity to speak or present at symposia or conferences.