We had the pleasure and honour to judge the application for the Social Entrepreneurs Ireland Awards. Met Tony Heffernan there. This is his story and initiative:
The Saoirse Foundation is a registered non-profit children’s charity which, when originally established in March 2010, by Mary & Tony Heffernan, was initially dedicated to just Batten Disease under the Bee for Battens banner. The organisation is named after their daughter, Saoirse, who suffered from this ultra-rare and fatal disease. In January 2011 this fatal neurological condition claimed Saoirse’s life, then just 5 years of age. Tony and Mary’s only other child Liam was also diagnosed with Batten Disease and in May 2014 this condition sadly claimed little Liam’s life, also aged just 5.
The Saoirse Foundation is pro-active in patient support, advocacy and promotion of rare and genetic disorders, and holds a number of positions in national and international charitable umbrella groups and collaborations. Presently Tony Heffernan is the parent & patient representative in the Minister for Health’s Steering Group for Rare Disease , established in 2011, and sanctioned to develop Irelands 1st Rare Disease Plan, our national policy and its five year implementation strategy. The National Plan shall be completed in March 2014.
The Saoirse Foundation operates as non-profit organisation and in 2013 our voluntary board of directors, progressively took steps to extend its charities remit and objectives. Our Mission statement has remained the same, always Making Positive Life Impacts for Sick Children! Currently we are actively operating three projects, Bee for Battens, Liams Lodge & the BUMBLEance. Our CEO, Tony Heffernan, does not take a salary, pension, top up or bonus from the organisation, and actively promotes transparency and accountability in the charity sector. Over a 3 year period, 92% of every euro the charity receives goes to the cause.
Bee for Battens (www.BeeForBattens.org) is Ireland’s National Charity for Batten Disease, providing an active support program for families and communities affected by Batten Disease, throughout every stage of the condition, from diagnosis to symptom management, counselling and bereavement supports.. This includes family information packs, health care information and resources, ongoing family contact and support, national & international research. We currently hold the Presidency of the Batten Disease International Alliance.
As part of the charities decision to expand, we vowed to develop supports for many more sick children, particularly those affected by rare disease generally, which affect between 6-8% or the Irish population, that’s up-to 366,000 individuals, up to 70% of those affected are children, 30% of whom never make past their fifth birthday.
Our largest project Liams Lodge,(www.LiamsLodge.com) is named after Mary & Tony’s son Liam. Liam’s Lodge is designed to provide world-class respite services for children and their families, affected by rare and genetic disorders. These respite breaks are vital to ‘recharge the batteries’ and give the whole family some time together in a relaxed and safe environment that understands their situation and needs. The national centre will also develop accurate information systems and provide professional, accredited and specific training modules and packages to care providers and care practitioners in the field of rare & genetic disorders.
Liam’s Lodge will when fully built have twenty nine family lodges, and will support thousands of Irish families online and in practice by answering the pressing need for respite, essential for those families who care for children suffering from a range of conditions from debilitating disorders to life limiting conditions. Located in Blennerville, the vast ten acre site is on the edge of Tralee, close to all ammenities and just 2km Kerry General Hospital. When completed in full Liams Lodge will cater for 1560 families per year. This National Centre will in time be supplemented by three satellite facilities, located in the North West of Ireland, Louth and the South East, ensuring that in the future a family will no need to travel more than 2 hours to reach a lodge.
BUMBLEance is the World’s first fully interactive and most modern children’s service on the road and BUMBLEance is our solution for sick children who require ambulance transportation between home and the national treatment centres, children’s hospitals, hospice and respite centres. Every parent can relate to and understand how stressful an ambulance journey can be for a sick child. Most parents realise that transporting healthy children by car can be an experience in its own right and keeping the children entertained makes the journey better for everyone.
BUMBLEance (www.BUMBLEance.com) has everything on-board to remove the stress of ambulance journeys, including the latest games on SONY PlayStation, iPad’s & Apps, Audio & Video entertainment, etc….with its own WiFi onboard! We are here for the sick children of Ireland from both rural and urban areas, who are long term sick and /or seriously disabled, who need professional ambulance transport services. Catering for their every need en route to and from the principal centres of care. With BUMBLEance we literally deliver smiles and sick children all over Ireland. Our motto is ‘to make every trip a positive experience’. Our ambulance provides this service for free, and more importantly takes the pressure of all the family, particularly when making single journeys to hospice centres.