Founder & CEO Tony Heffernan

Tony Heffernan is the Founder and CEO of The Saoirse Foundation which grew out of the Bee for Battens initiative. Tony and his wife Mary were exposed to the full implications of what it is like to deal with of 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.

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. He is a key member of the Department of Health’s National Steering Group tasked with developing Ireland’s first national rare disease plan, and a director of the Medical Research Charities Group, the national umbrella group for charitable research in Ireland.

As part of his advocacy role, Tony told the Oireachtas Health Committee in 2015 that the proposed National Rare Disease Plan for Ireland 2014-2018 was a step in the right direction, but that the systems need to revolve around the patient, not the other way around.

Co-Founder Mary Heffernan

Mary Heffernan is a Co-Founder of The Saoirse Foundation. Established in March 2010, The Saoirse Foundation was initially founded as Bee for Battens, but saw rapid growth over the next few years. As mother to Saoirse and Liam, both of whom were diagnosed with the fatal condition Battens Disease, Mary knows full well the realities of living with a rare genetic condition.

Mary and Tony are only one of seven couples in the world who have two kids with Batten Disease. From Saoirse’s initial diagnosis in 2009, up to Liam’s death in 2014, Mary was a full time carer for her family, while also devoting herself in a voluntary capacity to the development of The Saoirse Foundation.

In 2014, just four weeks after Liam’s death, Tony and Mary Heffernan won the Pride of Ireland award, and later the same year, they were awarded RTE’s People of the Year Award for their selfless dedication and commitment to helping the families of sick children.