From Boothby to Biden: Ethan Greenfield’s journey living with type 1 diabetes and JDRF advocacy
Ethan Greenfield has been living with type 1 diabetes (T1D) for seven years, after being diagnosed at just four years old. Since then, Ethan, mum Kylie, and the Greenfield family have been fiercely advocating for the T1D community on behalf of JDRF, helping key decision makers like their local Boothby Member Louise Miller-Frost and Minister for Health Hon. Mark Butler understand what life with T1D is really like.
Along with supporting some significant advocacy campaigns for T1D, like advocating to get continuous glucose monitors subsidised for all Australians living with T1D, the Greenfields have also participated in fundraisers for JDRF to raise money for life-changing research, and been peer support mentors to newly diagnosed families.
After years of involvement with JDRF and raising the profile of T1D, Ethan has this year been selected to represent Australia at the JDRF 2023 Children’s Congress in Washington D.C., where he will head to Capitol Hill, brush shoulders with some of the top decision-makers in the U.S. government and connect with fellow T1D advocates from across the globe.
Ethan told us a little bit about his experience with T1D, and his journey from Boothby to Biden – read on to find out more!
Ethan’s T1D diagnosis
On the 25th September 2015, I was diagnosed with type 1 diabetes (T1D) at the age of 4. I have now had T1D for 7 years. I can still remember the day that it all unfolded. I was at kindergarten and my mum pulled me out and took me to the doctor. I asked her “where are we going?”, but I didn’t hear her response.
When we got there, my mum was speaking to the GP, and I heard him say the words ‘type 1 diabetes’. I felt like something bad was happening, so I started to shiver. When we got into the car, I asked her what was happening and she said, “we are going to hospital”. I asked if I needed to pack, and she told me we had to go immediately. So that’s where we headed, straight to the Women’s and Children’s hospital in Adelaide. My mum told them what had happened, and the rest is of my hospital stay is a blur.
Introduction to T1D technology
A few weeks later, my mum found out that that there was some new ground-breaking T1D technology called CGM (Continuous Glucose Monitoring) which meant that a needle could go into the skin for 7 days and you could see my glucose levels on my phone, instead of pricking a needle into my finger, squeezing out some blood, and a little machine telling me what my levels were multiple times a day. I overheard mum telling my dad that there is this amazing technology out there that could give us readings every 5 minutes. So, my mum went back to work so that my family could afford this incredible technology for me (at that time, there was no subsidised access).
After 6 months of T1D, I was then lucky to go onto an insulin pump instead of multiple daily injections, which meant that I didn’t require as many needles. It made it easier to dose insulin for the food I ate, and I had carer at school to help me program my pump for when I was eating food. Using technology such as CGM and insulin pumps means that I can have a lot more freedom.
Advocating for T1D
My family and I have spent 7 years advocating for T1D with all the Members of Parliament including my Member for Boothby (Louise Miller-Frost) and the Minister for Health (The Hon. Mark Butler).
I have enjoyed meeting with Federal Ministers and Senators, including previous Minister for Health, Hon. Greg Hunt, previous Member for Boothby Nicole Flint, candidate for Boothby Dr. Rachel Swift, and more over the years, and sharing with them what life with type 1 is like.
One of my favourite memories was travelling to Parliament House in Canberra for ‘Kids in the House’ and meeting with Members of Parliament as part of the ‘JDRF Promise to Remember Me Campaign’, advocating for funding for the JDRF Clinical Research Network, which supports ground-breaking T1D research.
We were the voice of the ‘Access for All Campaign’ in Boothby alongside advocates Hayden and Andrew Supple, which saw CGMs subsidised for all Australians living with T1D, which was very exciting, knowing that when I get past 21 years old (when the subsidy previously lapsed), I won’t have to worry about the cost of managing my T1D and instead can focus on things like buying a house.
My family and I have also done a lot to promote awareness of T1D in our local community. I can still remember my first JDRF One Walk… It was down at Glenelg, and we were walking 5km to raise money for a T1D cure. My school friends and family came down, and this was the first time that I was sharing the challenges with them that I faced daily living with T1D. We have attended every One Walk since then!
My mum and dad play a big part in advocating for T1D. They have committed to many fundraising events over the years as well as Walk, including barbecues, cycling events and long-distance running events raising a LOT of money for JDRF research.
At school, I continue to promote awareness to other students. I have shared lots of presentations to students in my year level, and school house. I do this to show them what it would look like if something bad happens, and how they can help me. We once had a school fundraising day where my whole school dressed up in blue casual clothes to support JDRF and generously donated to the foundation.
I have also really enjoyed being a peer support mentor for JDRF. I have made loads of new friends through T1D, some older, some younger and some the same age. It has been nice to meet friends going through the same thing as me.
Heading to the Children’s Congress
Going to Children’s Congress in Washington D.C means a lot to me. It will be an opportunity to meet new friends with T1D, learn how they manage everyday life and share my passion to find a cure for this relentless disease. I am very honoured to be selected for this role and represent my country.
During my visit I hope to share my story with Senators, Congressmen and Congresswomen. I want them to know how important lifesaving technology and equipment is, and how much I want research into diabetes to continue.
Life outside of T1D
Despite the juggling act of looking after my diabetes I really enjoy keeping active. I do this by playing tennis, netball, and cycling. Aside from sport, I also enjoy real estate, floor plan design, and interior design.
A message to JDRF and Government
We are truly grateful for all that JDRF and all the Ministers have done for us and type 1s. And we hope that someday we can find a cure to end type 1 diabetes.
The JDRF 2023 Children’s Congress
The JDRF 2023 Children’s Congress will take place from July 9 – 11, 2023, in Washington, D.C.
Every two years, more than 160 children living with type 1 diabetes (T1D) from within the U.S. and internationally gather in Washington, D.C., to meet face-to-face with some of the top decision-makers in the U.S. government.
The Delegates in JDRF’s Children’s Congress enjoy a once-in-a-lifetime opportunity to help Members of Congress understand what life with T1D is like and why research to fund life-changing therapies until a cure can be found is so critical. They speak up on behalf of the millions of people living with T1D and the families and friends who love them.
