Top Donation
A$8,480.00
Average Donation
A$8,480.00
Moving for those who no longer can
In December 2018, my grandfather, Jandre (Andrew) Bilic, was diagnosed with a rare and always fatal neurodegenerative brain disease known as Creutzfeldt–Jakob Disease (CJD).
CJD or prion disease is a misfolding disease where the prion protein converts to an abnormal form which interacts with the normal protein converting it to the abnormal form. This causes significant and rapid brain damage to a diagnosed individual, which affects essential motor functions and human senses.
The average life span of someone affected by CJD is 3 to 4 months and CJD although duration of illness can be weeks or up to 4 years. CJD is unique in that it is transmissible and can be genetic. In Australia we see about 75 to 85 cases year with the majority being sporadic or randomly occurring.
Before diagnosis, my grandfather was a very active man. Without missing a day at the crack of dawn, he would walk from his home to mine (some 2km) to pick up our dog Gus. He would then take Gus for a 5km walk around the local track before dropping him home, continue to complete another lap before deciding to make his way home. By this point, I would just be making my way out of bed to attend to my studies…
Within months, my grandfather went from the morning walker to completely bedridden. Unable to wash or feed himself. My grandmother, my uncle, my mother, my four beautiful sisters and I suffered as we saw the strong, courageous and inspirational man we all looked up to lay in his bed as my grandmother would feed him.
Jandre passed away on the 4th of June 2020. The pain and suffering my grandfather went through and the flow on effects it caused through my family is something I would not wish for anyone.
On the 12th of November 2022, I began my ultra running journey with the Great Southern Endurance Run (or GSER for short) 56km race and since then have competed in multiple races ranging from the half marathon through to 100km.
My last major race was the UTMB Ultra Trail Australia in the Blue Mountains of New South Wales. And now, it is time for my most audacious challenge to date.
On the 24th of August of 2026, I will be running the entire coast of Croatia. 827km with a target of 10 days.
Why Croatia?
Simply, this is where the roots of my heritage are founded. It only felt fitting to complete this challenge in the country my family is from.
The mission is to move for those who want to and no longer can. By doing so, my goal is to raise money to aid the CJD Support Group Network Australia.
I have set myself the target of raising $50,000.00 and I need your help to get there!
Links
- CJD Support Group Australia
- An Introduction to Prion disease – Professor Richard Knight
- Brain Foundation Australia
Recent Donations
Every campaign starts with one donation.
Be the one to make it happen!
Top Donors
No top donors listed yet.
Be one of the first to make an impact!
