Here at The Sandcastle Trust we believe that by working collaboratively with other rare genetic condition organisations we can achieve the greatest impact. We were pleased to help fund The Batten Disease Family Association’s recent family fun day held at Great Ormond Street Hospital. Batten Disease is a rare neurodegenerative, life-limiting genetic condition. Children appear healthy at birth and symptoms present during toddler or school years. Children then very rapidly lose their skills and become dependent on their caregivers for everything.
Harriet Lunnemann, Support and Advocacy Partner at The BDFA said: “It was fantastic that the Sandcastle Trust were able to support our first family fun day. It was great to be able to offer the families we work with the opportunity to get together to socialise and have fun with their children and as a group.”