Baby Arthur was born in 2021 with sagittal craniosynostosis and had to undergo a gruelling 10 hour operation on his skull to ensure his brain was able to grow properly. Inspired by their family’s experience, parents Katie and Sam decided to raise money for Headlines and Ronald McDonald House by undertaking a series of fundraising challenges. On 6 April Katie ran the Brighton Marathon and then, on, 17 May Sam undertook the Tenacious 10, a 10 hour endurance race in the Welsh mountains. Sam specifically chose this race to honour the 10 hours Arthur spent in surgery. Of their feats Sam says “We were completely out of our comfort zone, but we wanted to show some of the tenacity and resilience that our beautiful boy has shown us” In total, the pair have raised over £4,000 to date . Thank you Sam and Katie – we think you’re amazing! (fb)

17 year old Joel was born with frontosphenoidal craniosynostosis and has had a total of 5 different operations to alter the shape of his skull. Last September, Joel spoke about his experiences at our first-ever Young Persons Conference at UCL in London. He was so brilliant we invited him to write an article for the latest edition of our annual magazine, Headline News, which is posted out to all 2,500+ members free of charge. If you're a member and haven't received a copy, please email us via info@headlines.org.uk #craniosynostosismatters (fb)