Tony HeffernanFounder & CEO
Tony Heffernan is the Founder and CEO of the Saoirse Foundation. The organisation was initially founded as Bee for Battens but has seen a rapid growth over the past couple of years. As father to Saoirse & Liam, both of whom were diagnosed with the fatal condition Batten Disease, Tony knows full well the realities of living with Rare genetic Conditions, Saoirse passed away in Jan 2011, Liam passed away in May 2014. Tony is a former Ships Captain, having graduated in 1993 from CIT Cork, he returned in 1995/96 to complete his Masters.
President of the Batten Disease International Alliance, Tony is a key member of the Minister for Healths of Ireland National Steering Group to develop Ireland's first national rare disease plan and strategy. Tony is also a current director of the Medical Researcher Charities Group, the national umbrella group for charitable research in Ireland.
Mary Heffernan is a Co-Founder of the Saoirse Foundation which was established in March 2010. The organisation was initially founded as Bee for Battens but has seen a rapid growth over the past couple of years. As mother to Saoirse & Liam, both of whom were diagnosed with the fatal condition Battens Disease, Mary knows full well the realities of living with rare genetic condition. Saoirse passed away in Jan 2011 and Liam passed away in May 2014. Since Saoirse's diagnosis in 2009, Mary had been a full time carer for her family as well as supporting and directing the development of the Saoirse Foundation in a voluntary capacity.
Aged 45, Gerry is a professional motivational speaker and writer. His sporting CV is filled accomplishments such as running 32 marathons in 32 days and winning the 2011 UK DECA Enduroman Iron distance triathlon (24 Mile Swim, 1160 mile cycle, 262 mile run), an event dubbed ‘The toughest ten day endurance challenge in the World’. Gerry firmly believes that human beings can do far more than we give ourselves credit for and is keen on leading by example.
Other sporting accomplishments include; three Ironman Distance Triathlons (2.4 Mile Swim, 112 Mile Cycle, 26.2 mile run) and one Double Iron Distance Triathlon (4.8 mile swim, 224 mile cycle, 52.4 mile run).