On the 3rd May 2026, Aidan, Ellen and Mick Crean will be taking in the Dublin City Half Marathon together in support of NCBRS Worldwide Foundation. This challenge is more than just 21.1km for us – it’s an opportunity to push ourselves physically and mentally while raising vital funds for an organization doing incredible work. Many people would know our brother/son Charlie better than any of us! He is the light of our family and is always bringing a smile along with him, he truly is the happiest person we have ever met. When Charlie was 11, he was diagnosed with NCBRS. It was definitely a challenge navigating the rare syndrome without the diagnosis and the knowledge of the syndrome, but with the amazing work the foundation do, it is helping the individuals affected and family members every day.  

A little bit more about the foundation:

NCBRS Worldwide Foundation is a global non-profit organization dedicated to supporting individuals affected by Nicolaides-Baraitser Syndrome (NCBRS) and their families, carers and the professionals who work with them. They provide vital education, practical advice and resources, create support networks, and raise awareness to help people better understand and manage this rare genetic condition. The foundation also advocates for scientific research to improve medical knowledge and treatments for NCBRS, hosts conferences and community events, and works to build a global community where families, healthcare professionals and researchers can collaborate to ensure every person with NCBRS has the opportunity to reach their full potential.

Every donation, no matter the size, will help us reach our fundraising goal and make a real impact. Thank you so much for your support – it truly means the world to us!