When Tony and Mary Heffernan’s daughter Saoirse was diagnosed with Batten Disease (Neuronal Ceroid Lipofuscinoses – NCL) in 2009, there was no one in Ireland who knew about this inherited rare and fatal neuro-degenerative disorder that affects babies, young children and juveniles in Ireland and across the globe. The Heffernan’s only found the information and support they needed when they contacted the Batten Disease Research and Support Association in the USA, and the Batten Disease Family Association (BDFA) in the UK.
Bee for Battens is the first initiative of The Saoirse Foundation founded by Tony and Mary Heffernan. Bee for Battens is an Irish advocacy initiative that raises awareness about Batten Disease. The charity works closely with the medical profession, and with the international medical research community, to provide funding for Batten Disease research. Bee for Battens are a founding member of the Batten Disease International Alliance that represents patients, families, research and clinical facilities on every continent. Tony Heffernan was elected the Alliance’s first President in 2010.
In March 2010, the Heffernan family received more devastating news when they found out that their only other child, Liam, was also diagnosed with Batten Disease.
Bee for Battens is where families and persons affected by Batten Disease can come together for mutual support, advocacy and raising awareness about this devastating condition. We provide bereavement support and other direct and indirect support to all those affected by Batten Disease in Ireland, and we offer networking opportunities for families, medical professionals and supporters of our cause.
The Foundation also aims to educate medical professionals about Batten Disease. The rarity of the disorder means that few doctors are aware of it, and are therefore ill-equipped to advise parents on how best to help their child. BEE for Battens promotes and publishes research into the management of Batten Disease, and on behalf of the families, lobby the Irish government and the HSE.