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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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David Coleman

David is the parent of a child with Apert syndrome

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Dr. Caroline Hilton


Caroline is parent of a young adult with Apert syndrome

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Prof. Mehran Moazen

Mehran is Professor of  Biomedical Engineering at UCL

Darren Sloan

Darren is the parent of

a child with bi-coronal craniosynostosis

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Lucy Pearse

Vice Chair

Lucy is  parent of a child   

born with metopic craniosynostosis

Our staff
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Karen Wilkinson-Bell

Charity Director

Donna Connett.PNG
Donna Connett

Charity Administrator

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