The Saoirse Foundation is a registered non-profit charity dedicated to making positive life impacts for sick children. The charity 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.

Following Saoirse’s diagnosis, Tony and Mary were given no information, they had no idea what to expect, and they did not know where to seek help. Their determination that other families should be spared what they went through motivated them to create an advocacy charity to raise awareness about rare and genetic disorders, and to become actively involved in Irish and international medical research initiatives and steering groups. Thus, The Saoirse Foundation was born.

When the Heffernan’s son, Liam, was also diagnosed with Batten Disease, Tony and Mary decided to expand the charity’s remit to include children suffering from cancer, chronic illnesses or life-limiting conditions. The charity’s first project was ,Bee for Battens, a support network and a credible source of information for parents, families, and all those affected by Batten Disease. Through its global connections, Bee for Battens became a founding member of the Batten Disease International Alliance, a global organisation representing patients, families, research and clinical facilities from every continent. Tony Heffernan was elected the Alliance’s first president in 2010.

BUMBLEance, The Children’s National Ambulance Service, was The Saoirse Foundation’s second project. Liam had the distinction of being the first-ever child on board a BUMBLEance. 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.

The third project under The Saoirse Foundation umbrella 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.

We are very grateful to all those who have helped and supported us thus far, and we look forward to welcoming new supporters who will empower us to help even greater numbers of children with rare diseases.

• 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 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.