The Saoirse Foundation

Making positive life impacts for sick children and their families.

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.

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.

• Our vision is to give a voice to the sick children of Ireland, to deliver smiles to them, and to make their happiness, delight and well-being our #1 priority.
• Our goal is to maximize our impact, broaden awareness, and deepen the national conversation about rare disease and genetic disorders
• Our 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
• Our mission is to deliver long-term sustainable initiatives which fulfil the Saoirse Foundation’s vision, mission and objectives
• Our ethos is to treat our clients, staff, volunteers, partners and stakeholders with the respect and dignity they deserve

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.

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 , The Children’s National Ambulance Service. Launched in 2013, BUMBLEance is the world’s first ambulance service designed and tailored exclusively for children. In 2014, Liam was the first-ever patient to travel on board BUMBLEance as he travelled home from hospital for the last time on his Angel Trip.

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.

The Saoirse Foundation is also intensely involved in ongoing global research efforts aimed at furthering our knowledge of rare diseases and at increasing the chances of finding cures.

We are hugely grateful for the support we receive, and we look forward to welcoming new supporters who will empower us to help even greater numbers of children with rare diseases.