Our Consumer Representatives are an important part of our Centre, ensuring the real-life experiences of those living with T1D is considered in our work including those that care for them.
Find out why Adam, who lives with Latent Autoimmune Diabetes in Adulthood (LADA) and a dad caring for a daughter in South Australia that also lives with the condition, came to be involved in our research and what he finds challenging the most that research will hopefully change.
What led you to become a Consumer Representative and why?
Our youngest daughter (Georgia) was diagnosed with T1D at 10mths old in January 2019. Then in mid 2020, I was diagnosed with LADA (Type 1.5 diabetes).
Once some time had passed after a very traumatic diagnosis and the stress of raising a baby with T1D settled a little, my wife Stacey and I wanted to give back to the community as much as we could. We started to assist JDRF (now Breakthrough T1D) - Stacey becoming a mentor to other families newly diagnosed and I joined the Advocacy program in my local electorate. My wife also wrote a book for young children (0-8yrs) about type 1 diabetes, modern technology used to manage day to day and the importance of a good support network. The mental and emotional health side of this condition is something we want to try and help improve for the youngest in our community.
Through the exposure of the book, our family connected with Lia (from ACT) who was a member in the Type 1 Diabetes Community Advisory Group (T1DCAG) and advised that the team wanted to expand to other states. It was natural for me to find another avenue in which to contribute our lived experiences to the fabulous research community.
What have you been involved in so far?
- I have been lucky to have contributed in a number of areas, including:
- Providing feedback / commentary on research proposals
- Being part of the T1DCAG (and having the opportunity to chair a session)
- Sign letters of support for research grant applications; and
- Most recently, i've been able to contribute to the community input into research themes for the next 10 years
I am really looking forward to the Symposium in August, where I’ll be able to meet (for the first time) many of the other consumer advocates in person and be able to actively engage with the research community.
What do you hope will come from being involved?
I know the value that the whole T1DCAG bring to the Centre through our lived experience, providing a consumer insight to research proposals and I look forward to being part of that, providing a perspective of a father raising a young daughter (after being diagnosed after her!).
What do you think are the biggest challenges in caring for a child living with T1D?
T1D is totally unpredictable at times, and no two days are the same. My wife and I take a positive view that the technology we have at our feet makes things much easier than our peers who lived without it, but I think some of the biggest challenges are:
- T1D is a complex medical condition, and whilst there is great technology available to assist, it feels like living on a constant tight rope (particularly navigating activities such as kids parties/sports and illnesses like colds/flu);
- Being an active advocate for your child whilst navigating school (ensuring they have the same experience as other children); and
- Navigating the constant stigma or misunderstandings around type 1 diabetes in young children (particularly around food and activity). My wife and I see ourselves as educators as much as carers!
The Centre is very lucky to have Adam as a Consumer Representative. His passion and dedication to helping our researchers find new and better ways of managing T1D for people like him and his daughter, is definitely making a difference to our studies.
If you or someone you know would like to become a Consumer Representative and help make a difference, reach out to our Community Involvement Coordinator at community@childrensdiabetesresearch.org.au to find out more.