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. We want to try to save those affected and to find a cure for future generations. To do that, we need your help. Find out more...
When Tony and Mary Heffernan's daughter Saoirse was diagnosed with Battens Disease, there was simply no-one in Ireland who could provide the information and support they needed.
When they made contact with the Battens Disease Research & Support Association (USA) and the Battens Disease Family Association (UK), information started to flow, including contact with other affected families in the UK and Ireland.
In March 2010, the Heffernan family received more bad news when they found out that their other child, Liam, was also diagnosed with Battens Disease.
Tony and Mary decided to set up the Saoirse Foundation to provide parents, families and all those affected by Battens Disease on the island of Ireland with a support, networking, and a credible source of information. The Charity also became a member of a new global initiative between Patient Support & Research organization's 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/Health Boards/HSE on behalf of families.
- Bereavement support
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Thank you all for taking the time to help us along this journey. We greatly appreciate it. Without you we could not do the work that we do. I am forever grateful.
- Tony Heffernan Bee for Battens