» 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 exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome and help people with a diagnosis of CdLS to make informed decisions throughout their lifetime."

In the UK the Foundation is run entirely by volunteers including parents and professionals. Registered Charity No. 1054033.

Board of Trustees

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

General Trustees

Rachel Davies (Worcs); Faye Kett (Norfolk); Catherine McCarney (Gtr Manchester); Adele Noonan (Shropshire); Sara Peaford Smith (Essex); Ginny Penney (Essex); Ryan Saunders (Essex).

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)