Our patron

Professor Andrew Wilkie


Professor Wilkie is the clinical geneticist who identified the gene mutation responsible for Apert syndrome and the molecular pathways underlying this and other craniosynostosis conditions.   He is Nuffield Professor of Pathology at the  MRC Weatherall Institute of Molecular Medicine at the University of Oxford and an Honorary Consultant in Clinical Genetics, Oxford University Hospitals NHS Trust.

Our trustees
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Charlotte Ashby

Charlotte is an adult with unicoronal craniosynostosis

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Paul Cornell


Paul is the parent of a child with Saethre-Chotzen syndrome

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Charles Edwards


Charles is the parent of a  child with sagittal craniosynostosis

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Barry Fletcher

Vice Chair

Barry is an adult with and the parent of a child with sagittal craniosynostosis

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Dr. Caroline Hilton


Caroline is parent of a young adult with Apert syndrome

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Dr. Mehran Moazen

Mehran is a Lecturer in Biomedical Engineering and Associate Professor at UCL

Darren Sloan

Darren is the parent of

a child with bi-coronal craniosynostosis

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Colette Turnock

Colette is a Craniofacial

Nurse Specialist at Alder Hey Children’s Hospital

Our staff
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Karen Wilkinson-Bell

Charity Director

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Donna Connett

Charity Administrator