A Little about Bee For Battens
Battens Disease is a rare neuro-degenerative condition that affects babies, young children and juveniles. It is always fatal – we want to change that. Our goal is to try to save those affected and to find a cure for future generations.
When Tony and Mary Heffernan’s daughter, Saoirse, was diagnosed with Batten Disease, there was no one in Ireland who could provide the information and support that they needed. In March 2010, the Heffernan family received more bad news – their only other child, Liam, was also diagnosed with Batten Disease.
When they made contact with the Batten Disease Research & Support Association (USA) and the Batten Disease Family Association (UK) information started to flow, including contact with other affected families in the UK and Ireland.
Tony and Mary decided to set up the Saoirse Foundation to provide parents, families, and all those affected by Batten Disease in Ireland with a support network and a credible source of information. The charity also became a member of a new global initiative between patient support and research organisations worldwide.
- Provide care and support to all the children in Ireland affected by Neuronal Ceroid Lipofuscinosis (NCL), commonly known as Battens Disease.
- Advance the education of the medical profession about Battens Disease. The rarity of the disorder means that few doctors are aware of it and are unable to advise parents on how best to help their child.
- Promote research into the management of Battens Disease, to publish the results, and further the learning on how to tackle the disease.
- Lobbying Government/HSE on behalf of families.
- Bereavement support