Our Charity of the Year for 2024 was nominated by a member of our team, Chris Cooper.

Chris says: “My daughter Belle has a rare condition named Cornelia De Lange Syndrome (CDLS). CDLS is caused by a single genetic change affecting a single gene in each individual.

It is estimated that between 1 in 10,000 - 25,000 people in the population have CDLS. Most diagnoses are made based on the clinical features of the syndrome including birth weight, growth, size, limb differences and facial features. Most individuals with Cornelia de Lange syndrome had a severe to profound intellectual disability. Many individuals with CDLS experience social anxiety and are selectively mute.

Belle has a Gene change in SMC3 which we were very lucky to have found out about before her birth allowing us opportunity to be prepared, learn and plan.

Early diagnosis is hugely important to allow for the best possible life experience for children, adults and also carers of those affected.

There isn’t a huge amount of knowledge of the condition even within the medical profession which means children and adults can go years without the correct treatment or support – any money raised helps raise awareness… Any support for the foundation is hugely appreciated and work to improve lives.”