» 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 UK & Ireland 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 & Ireland the Foundation is run entirely by volunteers - including parents and professionals, plus a part-time Office Administrator. Trustees are elected, or re-elected at the AGM. In addition, we have regional points of contact - the Regional Volunteers.

Registered Charity No. 1054033.

Board of Trustees

Elected Officers
Chairman – David Axtell (Essex) First elected 2010
Vice-Chairman – Charles Blockley (Derbyshire) First elected 2017
Treasurer - Bjorn Harris (Surrey) First elected 2022
Hon. Secretary – Ginny Penney (Essex) First elected 2016

General Trustees

Kelly Boland (Shropshire) First elected 2022
Faye Kett (Norfolk) First elected 2012
Catherine McCarney (Gtr Manchester) First elected 2012
Sara Peaford Smith (Essex) First elected 2016
Ryan Saunders (Essex) First elected 2013
Jack Young (Gloucestershire) First elected 2019

Special Advisors

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

Office Administrator

Natalie Blockley

UK Scientific & Clinical Advisory Team

Co-Chair – Dr Jo Moss (Surrey, Psychology)
Co-Chair – Dr Jenny Sloneem (London, Psychology)
Secretary – Dr Laura Groves (Birmingham, Psychology)
Dr Peter Gillett (Edinburgh, Gastroenterology)
Dr Anne Lampe (Edinburgh, Clinical Genetics)
Professor Chris Oliver (Birmingham, Psychology)
Sara Peaford Smith (Essex, Speech and Language)
Professor Frank Kaiser (Essen, Germany, Molecular Genetics)
Dr Jane Waite (Aston, Psychology)
Joe Curry (London, Neonatal & Paediatric Surgery)
Dr Richard Fitzgerald (Surrey, Special Care Dentistry)

Associate Members:
Dr Katherine Ellis
Dr Caroline Richards
Dr Victoria Perry
Dr Hayley Crawford