Celebrate your Life in 2020 and Donate Your Age in euros towards Bee for Battens. Donate just €1 for each year of your life and make a vital difference to critically ill children nationwide.


Saoirse is the inspiration for our charity, and watches over us to ensure that we are “Making Positive Life Impacts For Sick Children”.


Bee for Battens

Bee For Battens is a place where families and persons affected by Battens Disease can come together to help raise awareness about this devastating condition whilst providing support for one another.

Our contacts and networking with other Battens Disease parents, families & Charities around the globe has grown and grown, which has provided us with the most reliable source of information and support available, from those who live with Battens day in day out.

“In the past it has been very difficult for parents to find any information at all about this illness. The rarity of the disorder means that few doctors are aware of it and parents of course want to know, on a practical level, how they can best help their child.”

Tony Heffernan, Bee for Battens


News updates in relation to Batten Disease research, events, and milestones and developments in our charities!


By getting involved in Bee for Battens, you have the chance to really help those affected by Batten Disease and other rare diseases.


Help us raise much needed funds to support those affected by Batten Disease, and work towards finding a cure.