Tony Heffernan is the Founder and CEO of The Saoirse Foundation, and creator of the vision for Liam’s Lodge. Tony and his wife Mary were exposed to the full implications of what it is like, to deal with living with rare genetic conditions when both their children, Saoirse and Liam, were diagnosed with the fatal condition, Batten Disease. Saoirse passed away in January 2011, and Liam lost his battle with Batten Disease in May 2014.
Tony is a former Ships Captain. After graduating in 1993 from CIT Cork, he returned in 1995/96 to complete his Masters. He is a key member of the Minister for Health’s National Steering Group tasked with developing Ireland’s first national rare disease plan and strategy. Tony is also a director of the Medical Research Charities Group (MRCG), which promotes a dynamic approach to medical research in Ireland, with the ultimate goal of improving the nation’s health.
Tony is a founder member of the Batten Disease International Alliance, a global organisation representing patients, families, research and clinical facilities from every continent. He was elected the Alliance’s first president in 2010.
In 2014, Tony and Mary were awarded RTE’s People of the Year Award for their selfless dedication and commitment to helping the families of sick children. Despite their own personal tragedies, the Heffernans have worked tirelessly to help families of children, especially those with rare and complex conditions.