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. At the time, Tony and Mary were given very little information and had nowhere to turn for support. Determined to spare other families the same experience, they became advocates for children and families affected by rare and genetic disorders.
Their awareness-raising work and support for medical research led to the creation of The Saoirse Foundation, a registered non-profit charity based in Ireland.
The Saoirse Foundation’s Goals, Mission & Ethos
- The goal of The Saoirse Foundation is to maximise impact, broaden awareness, and deepen the national conversation around rare disease and genetic disorders.
- The Foundation’s vision is an Ireland where children and families affected by Batten Disease and other genetic disorders have access to the best possible quality of life.
- It works to deliver long-term, sustainable initiatives that support its mission and objectives.
- It is committed to treating clients, staff, volunteers, partners and stakeholders with the respect and dignity they deserve.
3 Amazing Projects From The Saoirse Foundation
#### #1. Bee For Battens
The Saoirse Foundation’s first project was Bee For Battens, a support network that raises awareness and acts as a trusted source of information for anyone affected by Batten Disease. Bee For Battens partners with Batten Disease support organisations around the world to help fund research. Tony Heffernan was the first President of the Batten Disease International Alliance.
#### #2. BUMBLEance – The Children’s National Ambulance Service
When the Heffernans’ second child, Liam, was also diagnosed with Batten Disease, the Foundation’s reach expanded with a second project: BUMBLEance.
Launched in 2013, BUMBLEance was designed and tailored exclusively for children. Liam was the first child ever to travel on board a BUMBLEance in 2013, and his final journey on BUMBLEance was his Angel Trip, bringing him home from hospital for the last time in 2014.
#### #3. Liam’s Lodge
A third initiative from The Saoirse Foundation is Liam’s Lodge, intended to provide much-needed respite for families caring for children with debilitating and life-limiting conditions.
How The Saoirse Foundation Can Help
If you or a family you know could benefit from the support of The Saoirse Foundation, you can get in touch by calling them or filling in their contact form.
You can find out more about their work to make positive life impacts for sick children and their families by visiting the Saoirse Foundation website or their Facebook page.
If you would like to support their work with a donation, you can do so here.
Frequently Asked Questions
Who founded The Saoirse Foundation?
The Saoirse Foundation was founded in 2010 by Tony and Mary Heffernan, after their daughter Saoirse was diagnosed with Batten Disease.
What does The Saoirse Foundation do?
The Foundation raises awareness of Batten Disease and other rare genetic disorders, supports medical research, and runs practical initiatives for affected families, including Bee For Battens, BUMBLEance, and the planned Liam’s Lodge respite centre.
What is BUMBLEance?
BUMBLEance is a children’s ambulance service created by The Saoirse Foundation, designed specifically to transport children in a way that feels safe and comfortable for them and their families.
How can I contact or support The Saoirse Foundation?
You can reach The Saoirse Foundation through the contact form on their website, follow their work on Facebook, or make a donation directly through their website.
Related Articles
- Family Support Organisations Making a Difference in Ireland
- How Irish Charities Are Supporting Families of Children with Rare Conditions
- Understanding Batten Disease: Resources for Families
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