Why the Sanfilippo cause?
“My involvement with the Sanfilippo cause started when my friends Megan and Allan Donnell received the tragic diagnosis of Sanfilippo Syndrome for both their children Isla and Jude. I couldn't fathom the thought of what the future held for their family: the fact that parents can be told their children have an incurable fatal condition and that nothing can be done is simply unbearable. Rare paediatric conditions like Sanfilippo are devastating but receive little attention: I felt from the very beginning that doing nothing was not an option. I think the Foundation has demonstrated the importance of getting involved with such a cause and the impact it can have for families of children with Sanfilippo.”
How are you inspired by the work of the Foundation?
“Every time I look at what the Foundation has achieved, I am taken aback by how much can be done through sheer willpower and collective spirit, and this in turn fuels the desire to do more. I’m inspired by everyone who has chosen to get involved with the Foundation, from families to donors, supporters, scientists, staff and volunteers; every person who's said: ‘Yes this is hard and there's no easy fix, but I can do something’. The Foundation is the perfect example of something that is so much more than the sum of its parts.
Which value do you bring to our team and how?
“The value that resonates the most with me is Determination, and I try to bring this by adopting a problem-thinking attitude and always keeping the end goal in mind. No matter how tough the path may be, the potential to improve and save the lives of children with Sanfilippo will always outweigh the difficulties we encounter. The value I admire the most though is Resilience and I am forever in awe of the strength and courage of children with Sanfilippo, and their families and carers.”
What's your favourite motivational quote?
“Not a quote as such, but I would say ‘why not?’. Too often when we try to change things, particularly in the space of medical research and rare conditions, we are met with negatives; ‘it's not possible’, ‘this won't work’, ‘you can't do this’. If we systematically ask ourselves why not, it helps us challenge the status quo, work out what our real obstacles are, and then find ways of overcoming them.