The Saoirse Foundation
When Tony & Mary Heffernan were told that their only daughter Saoirse had Batten's Disease on the 25th of September 2009, they left the hospital in Dublin with no information about Batten's Disease, what to expect or where to look for help. They vowed that this would have to change.
The charity works closely with the medical profession, researchers and other international charities which provide patient support, advocacy and invest in research into Batten Disease.
Through its global connections, Bee For Battens is a founding member of the BATTEN DISEASE INTERNATIONAL ALLIANCE, a worldwide organization representing patients, families, research & clinical facilities from every continent. Tony Heffernan was elected the Alliance's 1st President.
The Saoirse Foundation continues to grow and expand, assisting more & more families affected with this disorder. We offer support but welcome all those affected and understand first hand, the difficulties a family face when dealing with fatal conditions. The charity is also pursuing the development Irelands 1st Respite Centre for families of children with Rare Diseases, this facility, which will called "Liam's Lodge", is named after Tony & Mary's only other child, Liam, who also suffers from Batten Disease. The facility is to be located in Tralee Co Kerry.
The Goals of The Saoirse Foundation are clear, we will do what ever is necessary to try to save those presently affected and find a cure for future generations:
- Provide support to all those affected by Batten Disease, both directly and indirectly and to develop networking opportunities for families, medical professionals and supporters of our cause.
- Preserve and protect the health and promote the welfare of persons affected by all types of Neuronal Ceroid Lipofuscinosis (NCL) commonly known as Batten disease.
- To advance the education of the medical profession and the general public on the subject of Batten Disease and its implications for the family.
- To promote research into the management of Batten disease and to publish the useful results thereof and to support organisations promoting research into Batten disease.
- To represent those affected by Batten Disease and other RARE Diseases and promote public awareness of the these conditions.
- Operate and maintain a website to promote the charities aims & objectives and generate awareness of Batten Disease.