Leukodystrophy Australia

10/06/2026

𝐕𝐚𝐥𝐞 𝐉𝐨𝐡𝐧 𝐎𝐥𝐬𝐞𝐧 𝐎𝐀𝐌 (𝟔 𝐍𝐨𝐯𝐞𝐦𝐛𝐞𝐫 𝟏𝟗𝟓𝟏 – 𝟖 𝐉𝐮𝐧𝐞 𝟐𝟎𝟐𝟔)

We are deeply saddened to share the news that our dear friend, John Olsen OAM, passed away on Monday, 8 June.

We send our heartfelt condolences and love to John's family and friends during this difficult time.

John was a truly compassionate, kind and caring man who changed many lives through his unwavering commitment to helping others.

He will be greatly missed by all who had the privilege of knowing him.

John's 𝐟𝐮𝐧𝐞𝐫𝐚𝐥 𝐬𝐞𝐫𝐯𝐢𝐜𝐞 will be held on 𝐅𝐫𝐢𝐝𝐚𝐲, 𝟏𝟗 𝐉𝐮𝐧𝐞 𝐚𝐭 𝟐:𝟎𝟎𝐩𝐦 𝐚𝐭 𝐊𝐢𝐧𝐠𝐬 𝐅𝐮𝐧𝐞𝐫𝐚𝐥𝐬 𝐂𝐡𝐚𝐩𝐞𝐥, 𝟏𝟑𝟎 𝐁𝐞𝐥𝐥𝐚𝐫𝐢𝐧𝐞 𝐇𝐢𝐠𝐡𝐰𝐚𝐲, 𝐍𝐞𝐰𝐜𝐨𝐦𝐛, 𝐕𝐈𝐂 𝟑𝟐𝟏𝟗.

Details of John's service, including the livestream link, can be found here:

https://kingsfunerals.com.au/tributes/?funeral=umu5l

You are also welcome to leave a tribute message for John and his family via that page.

John's family has kindly requested that, in lieu of flowers, donations be made to Leukodystrophy Australia by anyone who wishes to do so. Donations can be made online via the link below:

https://leuko.org.au/support-us/donate/once-off-donation/

We sincerely thank John and his family for thinking of our leukodystrophy community through this generous gesture during such a sad time.

09/06/2026

Do you have any nicknames for equipment to support you or your loved one?

Here's a video by Travis (Dad to James) making light of the amount of equipment in their lives! We think you will relate.

08/06/2026

𝐃𝐨 𝐲𝐨𝐮 𝐨𝐫 𝐬𝐨𝐦𝐞𝐨𝐧𝐞 𝐲𝐨𝐮 𝐤𝐧𝐨𝐰 𝐡𝐚𝐯𝐞 𝐇-𝐀𝐁𝐂? 𝐖𝐞'𝐝 𝐥𝐨𝐯𝐞 𝐲𝐨𝐮𝐫 𝐡𝐞𝐥𝐩!

The Translational Centre for Speech Disorders (Australia) is a conducting a research study to better understand speech patterns in children and adults with H-ABC (Hypomyelination with Atrophy of the Basal Ganglia and Cerebellum).

Participation involves:
✅A short online survey to complete
✅15min speech task

📱To learn more contact:

1. 𝐂𝐥𝐚𝐢𝐫𝐞 at Leukodystrophy Australia on 0418-790-059 or [email protected]

2. Or scan the QR or contact 𝐑𝐮𝐭𝐡 𝐁𝐫𝐚𝐝𝐞𝐧 at: [email protected]

02/06/2026

01/06/2026

📢 New Alexander Disease Information Page

Leukodystrophy Australia thanks Rare Voices Australia for developing a dedicated Alexander Disease information page on their RARE Portal.

Alexander Disease is one of more than 60 recognised leukodystrophies.

📖 Read more:
https://www.rareportal.org.au/rare-disease/alexander-disease/

💬 If you would like to share your experience living with Alexander Disease, submit your story here: https://rarevoices.org.au/share-your-story/ Selected stories may be published on the RARE Portal to help raise awareness and support others.

Additional leukodystrophy condition information pages are currently being developed for the Rare Disease Directory.

26/05/2026

Some people leave footprints wherever they go. John Olsen has left them right across Australia — and in the hearts of so many in our leukodystrophy community.

John’s extraordinary walks across the country were driven by love, compassion and an unwavering commitment to helping others living with leukodystrophy and disability. Through every step, he brought awareness, hope and vital support to families facing incredibly difficult journeys.

We are deeply saddened to learn that John is now facing a serious health battle of his own.

As we reflect on his remarkable contribution, we want to thank John for the kindness, courage and generosity he has shown our community over many years. His determination and spirit have inspired countless people and created a lasting legacy that will never be forgotten.

Our thoughts and heartfelt wishes are with John, his loved ones and all those supporting him during this difficult time. ❤️

📽 Watch "John's Long Walk for Leukodystrophy" here:
https://www.youtube.com/watch?v=n-mgRZ8ILms

26/05/2026

We have recently received the very sad news that our good friend John Olsen is gravely unwell, having been diagnosed with late-stage pancreatic cancer.

John has shared that his time is now expected to be very limited. This is heartbreaking news for all who know him and for the many people whose lives have been touched by his courage, generosity and good humour.

John’s extraordinary stoicism and determination saw him become the first person to walk unaided across Australia three times, raising vital funds for Leukodystrophy Australia and the Australian Lions Children’s Mobility Foundation. That achievement reflects so much of who John is: brave, selfless, resilient and deeply committed to helping others.

At this very difficult time, our thoughts are with John, his family and all who love and support him.

For those who don’t know of John and his amazing commitment to others, he completed his three walks across Australia, north to south, west to east (followed by a 'leisurely' walk home from Byron Bay to Geelong) and north east to south west. He walked a total of over 17,000kms. That's an average of over 12 million steps per walk - to put this into context, for those who count their steps, he averaged approximately 60,000 steps per day over his three walks (accumulated over approximately 21 months).

John was aiming for a record-breaking fourth walk (north west to south east) in 2022, but was forced to stop on day 5 after suffering a stroke.

In his middle age, John met his beautiful partner and love of his life, Vida Brazionis, who was suffering from a rare and life-limiting Leukodystrophy condition. He cared for Vida until she sadly passed away in 2014.

John is a true champion whose kindness and generosity of spirit have helped so many people living with disability. He has left a lasting legacy through his walks and fundraising for our leukodystrophy community. John's walks were supported by the Lions Club of Geelong Corio Bay, and we again thank them for supporting John and our community.

John has taken his diagnosis in his stride, which is an apt metaphor for a man who has taken tens of millions of strides for leukodystrophy.

We wish to again pay tribute to our dear friend and supporter, John and send him our very best wishes, immense gratitude and love to help him through his health journey ahead.

Please take a minute to watch this video featuring John.
Long Walk for Leukodystrophy 2016 | John Olsen OAM

19/05/2026

Today, 𝐌𝐚𝐲 𝟐𝟎 is 𝐈𝐧𝐭𝐞𝐫𝐧𝐚𝐭𝐢𝐨𝐧𝐚𝐥 𝐂𝐥𝐢𝐧𝐢𝐜𝐚𝐥 𝐓𝐫𝐢𝐚𝐥𝐬 𝐃𝐚𝐲 2026.

Australia has the clinical expertise, trial infrastructure, genomics capability and rare disease leadership needed to drive leukodystrophy research and therapeutic innovation.

We thank the researchers, clinicians and scientists working to improve outcomes for children and adults living with leukodystrophies.

But too many Australian families are still watching promising international drug trials and gene therapies progress overseas while waiting for access at home.

Greater Australian and global investment in paediatric and adult natural history studies, clinical trials, translational research and fit-for-purpose HTA pathways is urgently needed to accelerate access to life-changing therapies.

19/05/2026

Leukodystrophy Australia thanks Rare Voices Australia for co-developing the Leukodystrophy page and for the contributions of medical specialists.

Read the Leukodystrophy (general) information page at: https://www.rareportal.org.au/rare-disease/leukodystrophy/

If you would like to share your personal journey living with leukodystrophy, you can do so here: https://rarevoices.org.au/share-your-story/
Stories may be considered for publication on the RARE Portal, like Ryan’s Story.

This is the first of several leukodystrophy condition pages, with more being developed on the Rare Voices Australia Rare Disease Directory. https://www.rareportal.org.au/rare-disease-directory/

19/05/2026

Leukodystrophy Australia is grateful to the Childhood Dementia Initiative for the opportunity for parents of children with leukodystrophies to participate in this important consultation to inform government and improve health systems.

The Long Table consultation created a respectful and supportive space where parents and carers could openly share their lived experiences. For many families, contributing was both validating and empowering. Families felt safe to share their experiences and suggestions for health system improvements, and were encouraged by the genuine commitment to improving care for those affected by childhood dementia across Victoria and Tasmania.

Thank you to the parents and carers who participated from across Victoria and Tasmania.

On Friday 15 May, Childhood Dementia Initiative brought the Long Table consultation to Melbourne — and the conversations that took place were exactly why this model matters.
The photo captures the Long Table method well: parents and carers of children with dementia seated at the table, sharing their lived experience freely and in their own words. Around them, professionals from health, disability, allied health, palliative care, research, and policy seated in a respectful outer circle, listening without interruption.
Before the session, parents were asked to think about the challenges they have encountered in the Victorian and Tasmanian health systems, what has worked well, and what improvement would create the greatest impact. True to the Long Table model, the session itself was entirely unmoderated, unfacilitated, and parent-led.
We are deeply grateful to the parents who attended and shared their reflections. The conversation they had helped deepen understanding of families' experiences and will be captured in a follow-up report.
We are also grateful to all who came to listen with such openness. In the conversations after we closed the table, we saw genuine interest in making real improvements for children and families — and that matters.
Big thank you also to the CommBank Staff Foundation for making this event possible. 🙏