The Saoirse Foundation was founded by Tony and Mary Heffernan in 2010 after their daughter, Saoirse, was diagnosed with Batten Disease (Neuronal Ceroid Lipofuscinoses – NCL) – a rare and fatal neurological condition. Tony and Mary were given no information, they had no idea what to expect, and they did not know where to seek help. They were determined to spare other families this experience.
Tony and Mary became advocates for families of children with rare and genetic disorders. Their awareness-raising activities and medical research initiatives led to the creation of The Saoirse Foundation, a registered non-profit charity.
The Saoirse Foundation Goals, Mission & Ethos
- The goal of The Saoirse Foundation is to maximise impact, broaden awareness, and deepen the national conversation about rare disease and genetic disorders.
- The dream is to create an Ireland where children and families affected by Batten Disease and other genetic disorders have access to the best quality of life.
- Deliver long-term sustainable initiatives which fulfil the Saoirse Foundation’s vision, mission and objectives
- Treat clients, staff, volunteers, partners and stakeholders with the respect and dignity they deserve.
3 Amazing Projects From The Saoirse Foundation
#1. Bee For Battens
The Saoirse Foundation’s first project was Bee for Battens, a support network that raises awareness and is a credible source of information for anyone affected by Batten Disease. Bee for Battens partners with global Batten Disease support organisations to fund research. Tony Heffernan is the first President of the Batten Disease International Alliance.
#2. BUMBLEance – The Children’s National Ambulance Service
When the Heffernan’s second child, Liam, was also diagnosed with Batten Disease, the reach of The Saoirse Foundation was expanded to a second project, BUMBLEance.
Launched in 2013, BUMBLEance is the world’s first ambulance service designed and tailored exclusively for children. Liam had the distinction of being the first-ever child to travel on board a BUMBLEance in 2013. Liam’s final trip on BUMBLEance was his Angel Trip when he came home for the last time from hospital in 2014.
#3. Liam’s Lodge
A third initiative of The Saoirse Foundation is the planned Liam’s Lodge, which will provide much-needed respite for the families who care for children suffering from debilitating disorders and life-limiting conditions.
How The Saoirse Foundation Can Help
If you or a family you know needs the help of The Saoirse Foundation you can contact them in a number of ways. By calling them on (083) 0044444 by filling in their contact form.
If you would like to make a donation to help with fundraising, please do so here.