The Saoirse Foundation- BUMBLEance Children’s National Ambulance Service
Kids Guide encourages you to Support the Saoirse Foundation. It is making positive life impacts for sick children and their families all across the island of Ireland.
The Saoirse Foundation was founded by Tony and Mary Heffernan in 2010 after their daughter, Saoirse, was diagnosed with Batten Disease (Neuronal Ceroid Lipofuscinoses – NCL) – a rare and fatal neurological condition. Tony and Mary were given no information about this disease and they had no idea what to expect for Saoirse and themselves, and did not know where to seek help.
Determined to help other families avoid this most difficult experience, Tony and Mary took action and became advocates for families with children diagnosed with rare and genetic disorders. Their awareness-raising activities and medical research initiatives led to the creation of the registered non-profit charity, named after their daughter, The Saoirse Foundation.
- The Foundation’s vision is to give a voice to sick children across Ireland, to deliver them smiles, and make their happiness, delight and well-being the #1 priority.
- Our goal is to maximize our impact, broaden awareness, and deepen the national conversation about rare disease and genetic disorders in particular in children.
- Our dream is to create an Ireland where children and families affected by Batten Disease and other genetic and rare disorders have access to the best quality of life possible.
- Our mission is to deliver long-term and sustainable initiatives to fulfil the Saoirse Foundation’s vision, mission and objectives.
- Our ethos is to treat our clients, staff, volunteers, partners, and all stakeholders with the respect and dignity they deserve.
Three Major Initiatives for an even Bigger Impact
The Saoirse Foundation’s first project was Bee for Battens, a support network to raise awareness and be a credible source of information for anyone affected by Batten Disease. Bee for Battens partners with global Batten Disease support organisations to fund research. Tony Heffernan is the first President of the Batten Disease International Alliance.
When the Heffernan’s second child, Liam, was also diagnosed with Batten Disease, The Saoirse Foundation expanded its reach to a second project, BUMBLEance, The Children’s National Ambulance Service. BUMBLEance is the world’s first ambulance service designed and tailored exclusively for children. It was launched in 2013. In 2014, Liam was the first-ever patient to travel on board BUMBLEance as he travelled home from hospital for the last time on his Angel Trip.
The upcoming third initiative of The Saoirse Foundation is called Liam’s Lodge, which will provide a much-needed respite facility for the families who care for children suffering from debilitating disorders and life-limiting conditions.
The Saoirse Foundation is also intensely involved in ongoing global research efforts aimed at furthering our knowledge of rare diseases and at increasing the chances of finding cures.
We are hugely grateful for the support we receive, and we look forward to welcoming new supporters who will empower us to help even greater numbers of children with rare diseases.
Why not become a Volunteer/Regular Donor or organise a fundraiser at your office or school – become a Corporate Charity Partner – we would love to have you “come on board #TeamBUMBLEance” and we can come visit you – you can contact us as follows:
Phone: 083 004 4444
Address:The Saoirse Foundation, 2 Jame’s St, Tralee, Co Kerry, Ireland. V92 T6PH
Revenue – Registered Charity No: CHY 19226
Charities Regulatory Authority – Registered No: 20075163
CRO – Company No: 418251