Advocacy Spotlight: Meet Rebecca & Nikolas
Nikolas Mirco is 12-year-old West Australian who has been living with type 1 diabetes (T1D) since he was seven years old. He and his mum, Rebecca, joined JDRF Australia’s advocacy program this year, to raise the profile of T1D and advocate for increased research funding for the JDRF Clinical Research Network (CRN).
Nikolas and Rebecca have met with their local member, Mr Sam Lim MP, and attended a special event recognising JDRF’s advocacy at Government House, hosted by the Governor of Western Australia, His Excellency the Honourable Chris Dawson AC AMP, and his wife, Mrs Darrilyn Dawson.
Nikolas with Governor of Western Australia, His Excellency the Honourable Chris Dawson AC AMP, and his wife, Mrs Darrilyn Dawson
We spoke to Rebecca and Nikolas about why they got involved with JDRF’s advocacy and their hopes for the future of T1D.
Rebecca:
Why did you join JDRF’s advocacy program?
I joined the advocacy program to give type 1 diabetes (T1D) a voice and help support research programs. Unless you know someone with T1D you don’t really understand too much about it, and this was definitely the case for us. Through the advocacy program we want to educate and raise awareness, help advocate for funds for the Clinical Network Research (CRN) with Parliamentarians.
How did you start your journey with advocacy?
I signed up to become an advocate alongside my son Nikolas (Nik) and was supported and guided by Mel (Advocacy Manager) – we then organised a meeting with our local MP, Sam Lim and met up with him to share Nik’s diagnosis story. We also gave him important information on the CRN and asked him to pledge his support towards the much-needed funds.
Why is the Clinical Research Network important to you and your family?
The CRN is important to our family as we want Nik to be able to live a carefree life like a typical child, one without T1D. One where he doesn’t have to constantly live with the burden of a 24/7 chronic illness.
How did you go with your first meeting with your MP?
We had an amazing meeting with our MP Sam Lim, he was so overwhelmed by Nik’s diagnosis story that he then did a Parliamentary speech and read Nik’s story word for word. This was a truly special moment for us as well as including a large platform to support the CRN and awareness.
Rebecca and Nikolas with Sam Lim MP
What are your hope and dreams – personally and from a T1D perspective?
My hopes and dreams are to live a happy, healthy, and meaningful life with my family. From a T1D perspective, I would like to see a world where T1D doesn’t exist, one where T1D is eliminated entirely.
In the meantime, I have complete faith that life with T1D is improving. Having access to T1D technology, and closed loop therapies at our fingertips, and stem cell therapies the next 5-10 years is going to give way to all sorts of new technologies and treatments. I am very optimistic!
What has your advocacy lead to?
Nik and I were lucky enough to be invited to an event at Government house, hosted by His Excellency the Honourable Chris Dawson AC APM, Governor of Western Australia’ and his wife Mrs Darrilyn Dawson to thank the JDRF for all their hard work in advocacy and celebrate research achievements. Nik was asked to say a few words to explain what he has done for JDRF, it was a very proud Mumma moment that had me tearing up!! We met some wonderful people on the night and were able to share Nik’s story and we got to hear about many exciting things happening it the diabetes world.
Nikolas:
Why did you join JDRF’s advocacy program?
I joined the JDRF advocacy program so we can help find a cure for type one diabetes by asking for lots of money from the Government to support the CRN.
How did you start your journey with advocacy
We got our blue t-shirts, and my mum organised a meeting with my MP, Sam Lim. We went to his office, and I read him my diagnosis story and we explained to him how type one diabetes works and how it affects my life. Sam was very kind and made us feel welcomed and comfortable.
Why is the Clinical Research Network important to you and your family?
It is important because it helps by researching for a cure for type one diabetes and one day make a world without T1D.
How did you go with your first meeting with your MP?
I thought that our meeting went really well because he said yes to support the $50 million CRN ask and he told us stories about himself, and his family and they were really nice.
Nikolas with Sam Lim MP
What are your hope and dreams for your future?
My hopes and dreams are that we soon find a cure for T1D so then everyone can have a world free of T1D, and to be able to do whatever they want.
What has your advocacy lead to?
My advocacy has led me to take part in the ‘Kids in the House’ in Canberra where we visit Parliament House later this year, I have never been to Canberra before, and I can’t wait to be part of it to make a difference.
A big thank you Nikolas and Rebecca, and all of our advocates for their unwavering support and commitment to raising the profile of T1D.
Learn more about JDRF’s ask for $50m for the continuation of the Clinical Research Network here.
