» About the Foundation

The CdLS Foundation UK & Ireland is part of a Federation of CdLS family support groups around the world


The groups have a common mission.

"The CdLS Foundation is a family support organisation which exists to ensure early and accurate diagnosis of CdLS throughout the world, promoting research, and enabling individuals, families, friends and professionals make informed decisions and plan for the affected person’s present and future."

In the UK the Foundation is run entirely by volunteers - including parents and professionals, plus a part-time General Manager. Trustees serve 3 year terms, then stand for re-election. Registered Charity No. 1054033.

Board of Trustees

Elected Officers
Chairman – David Axtell (Essex) elected 2010
Vice-Chairman – Andrew Conlon (Surrey) elected 2006
Treasurer – Andrew Borge (Hertfordshire) elected 2008
Hon. Secretary – Tom O'Neill (Gtr Manchester) elected 1998

General Trustees

Charles Blockley (Derbyshire) elected 2017
Rachel Davies (Worcs) elected 2008
Faye Kett (Norfolk) elected 2012
Catherine McCarney (Gtr Manchester) elected 2012
Adele Noonan (Shropshire) elected 2016
Sara Peaford Smith (Essex) elected 2016
Ginny Penney (Essex) elected 2016
Ryan Saunders (Essex) elected 2013

Special Advisors

Medical Director Global SAC representation – Dr Peter Gillett
Honorary Life President - Alan Peaford (Essex)

General Manager – Jacquie Griffin

UK Scientific & Clinical Advisory Team

Chairman - Professor Chris Oliver (Birmingham University - Psychology)
Secretary - Dr Jo Moss (Birmingham - Psychology)
Dr Peter Gillett (Edinburgh - Gastroenterology)
Dr Jenny Sloneem (London - Psychology)
Dr David Fitzpatrick (Edinburgh - Paediatrics & Genetics)
Sara Peaford Smith (Essex - Speech and Language)
Professor Frank Kaiser (Lübeck, Germany - Molecular Genetics)
Professor Raoul Hennekam (Netherlands - Paediatrics & Genetics)
Dr Penny Fallon (London - Neurology)
Dr Emma Tonkin (Glamorgan - Molecular Research)
Dr Ross Breckenridge (London - Molecular Research)
Professor Peter Hammond (Associate)