Our Cause

We are raising money for Headline Craniofacial Support, which is the leading UK charity supporting people with craniosynostosis and other rare craniofacial conditions.

Craniosynostosis is a rare craniofacial condition where two or more plates of the skull prematurely fuse to each other, usually before birth. This results in the baby’s skull not growing properly and the newborn’s head shape being different at birth. The shape of the head may continue to change after birth as it grows.

Ronnie was officially diagnosed with ERF craniosynostosis when he was 3 years old. The condition was first reported in 2013, and lots of work is needed to fully research and come up with treatment. Ronnie is an ongoing outpatient at Great Ormond Street Hospital, where he contributes to vital studies about his condition by undergoing sleep studies.

Headline Craniofacial Support aims are to:

Provide support for people throughout their life to overcome the physical, psychological and social impacts of living with craniosynostosis and rare craniofacial conditions

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Facilitate research that seeks to advance understanding, ensures the provision of quality care, and identifies the best treatments for craniosynostosis and rare craniofacial conditions

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Raise awareness and educate people to improve public understanding of craniosynostosis and rare craniofacial conditions.