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 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.
|A message from Bee for Battens founder Tony Heffernan:
Dear Friends and Supporters
Thanks to our rapidly expanding contacts and networking with other Batten Disease parents, families and charities around the globe, we can now access the most reliable sources of information and support available.
In the past, it proved almost impossible for parents to find any information at all about this debilitating disease. With parents naturally eager to know, on a practical level, how they can best help their child, the rarity of the disorder means that few doctors are aware of it,
We greatly appreciate your taking the time to help us along this journey. Without you, we could not do the work that we do.