Our People, Our Stories

The parents and individuals who share their photos, videos and stories inspire us; they help us feel less alone on this journey.  If you’ve got something you wish to share please get in touch – we have a whole country of people who would love to hear from you.  Heartfelt thanks for your share.

Ethan and Oliver Hosking

Ethan and Oliver Hosking

Read the story of Ethan and Oliver Hosking and listen to the radio interview with parents Mark and Jasna Hosking, including Bronwyn Byrne/Leukodystrophy Australia from Radio Adelaide....

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John Olsen

John Olsen

John Olsen became the only person in history to walk unaided across Australia thrice. The grandfather of nine walked 5,622km in 2004, from north to south, then 7,500km in 2008, west to east. All this in the space of four gruelling years. He was a member and supported...

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Bindi Lee

Bindi Lee

Bindi Lee met John Olsen on his walk. 2017 I am feeling so humble and sad at the same time. The how I met John Olsen story is very special to me, and very long.......... I got a phone call from Morris Pieper, as I am the secretary of the Yulara Lions Club. He told me...

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Ethyn Yates

Ethyn Yates

Hi! This is Ethyn and he is 12, and turned the big 13 in June 2018. He has a little Sister, Charlee, who is 9 who loves him to bits. We live in a little town called Penola, South Australia. I am a carrier (Stacey) and have the Cerebral AMN so am on disability pension....

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Throw of The Dice by Katie Cincotta

Throw of The Dice by Katie Cincotta

Not many of us think about the genetic lottery we are born with – whether or not that exclusive DNA code will keep us
alive and kicking long enough to enjoy a retirement in the sun, and see our grandchildren grow up.

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Long Walk for Leukodystrophy 2016

Long Walk for Leukodystrophy 2016

#wheresjohn - John Olsen is a champion, walking diagonally across Australia (5,500 km) to raise funds in support of those living with Leukodystrophy. His only life line is a motorless trolley weighing in at 200kg. Leukodystrophy is a large group of severe...

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Australian Story – Cracking the Code

Australian Story – Cracking the Code

Introduced by Dr Norman Swan from ABC Radio's Health Report The Damiani family's story has been described as a breathtaking example of how medicine can be transformed by the determination of ordinary people. Four years ago, Stephen and Sally Damiani's baby son Massimo...

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