Moving for those who no longer can ‍♂️

In December 2018, my grandfather, Jandre (Andrew) Bilic, was diagnosed with a degenerative brain disease known as Creutzfeldt–Jakob Disease (CJD).

CJD is part of a family of prion diseases that attack the proteins of the brain through the blood-brain barrier. 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 from the day of diagnosis is one year. You can learn more about CJD at the bottom of this page.

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.

Why am I telling you all of this?

This year, I have decided to challenge myself and those reading this message.

On the 12th of November 2022, I began my ultra running journey with the Great Southern Endurance Run (or GSER for short) 56km race. The next phase of my journey will begin on the 11th of February at the Tarawera Ultramarathon by UTMB 102km race (TUM102) in New Zealand. The race will begin in Okatiana and travel through the Tarawera national park on a 2x 51km loop.

In reflection I have realised why I am doing this, and what “the mission,” is. It 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 of Australia. I have set myself the target of raising $15,000.00, and I need your help to get there! We have currently raise $5,800.00 which is absolutely incredible. The team from CJDSGN have shared their unwavering gratitude to all that have supported to date. ❤️

In my true fashion, I have set some fun donation “prizes” for those who are willing to dig deep in aid of the Network. Please try your hardest to embarrass me. These can be seen below.

Every donation, no matter how big or small, goes a long way to helping the CJDSNG provide information and support to families caring for or coming to terms with losing a loved one to CJD.

If you have any of your own creative ideas, I will be more than happy to consider them.

You can learn more about CJD and CJDSNG at some of the links I have included below.

Lets get moving people!

"Prizes" - Please let me know once you have donated if the prize allows you to get involved.

Links