Duchenne Australia

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Duchenne Australia Duchenne Australia is a national, parent-led organisation driving support, advocacy and research for the Duchenne community across Australia.

06/10/2026

Have your say - your experience matters.

In this bonus episode of Duchenne Connections Podcast, Michelle and Donna discuss the NDIS community survey developed by DMD Consulting, with support from Duchenne Australia and community contributors.

The survey takes around 30 minutes. Your lived experience will help build the evidence needed to advocate for NDIS support that better meets the changing needs of people with Duchenne and their families.

🎧 Listen to the conversation and follow the survey link: https://forms.cloud.microsoft/Pages/ResponsePage.aspx?id=AbJf9TO0SEmPR2nvriNrBaHJmZsJfnlDrLPxCNtr_FtURjE1SDBBNFI0TlE4R1hBQVlGWU02SU9MUS4u

79 hours. $91,779 raised 🤜🤛What an incredible community.Over the past 79 hours, you’ve worn the weights, shared your sto...
07/09/2026

79 hours. $91,779 raised 🤜🤛

What an incredible community.

Over the past 79 hours, you’ve worn the weights, shared your stories, donated, fundraised and helped start conversations about Duchenne.

Today, on World Duchenne Awareness Day, we take the weights off.

For people living with Duchenne, there is no final hour. The weight doesn’t simply come off.

That’s why we did this. To stand alongside our Duchenne community, raise awareness and help create a brighter future.

To every single person who participated, donated, shared, cheered us on or helped make Do It For Duchenne possible - thank you ❤️

$91,779 and counting.

We did it.

*Fundraising remains open until 30 September, so this incredible total is still growing.

Today is World Duchenne Awareness Day 🌏This year’s theme is Access Changes Lives.Access to early diagnosis.Access to exp...
06/09/2026

Today is World Duchenne Awareness Day 🌏

This year’s theme is Access Changes Lives.

Access to early diagnosis.
Access to expert care.
Access to clinical trials and new therapies.
Access to information, support and opportunity.

We’ve made incredible progress in Duchenne — but progress only changes lives when people can access it.

And as our community enters the final hours of Do It For Duchenne, we’re reminded exactly why we carry the weight.

For every person living with Duchenne. For every family. And for a future where access isn’t determined by where you live or your circumstances.

Meet Jack.Jack is 25 and living with Duchenne.He grew up on a farm in western NSW and was diagnosed at nine. Years later...
06/09/2026

Meet Jack.

Jack is 25 and living with Duchenne.

He grew up on a farm in western NSW and was diagnosed at nine. Years later, he moved six hours from home to study Information Technology at the University of Wollongong.

He lived independently, worked in IT, became a Resident Ambassador supporting other students and helped create an award-winning technology project designed to improve life for people with lower-limb amputations.

Jack’s story is a powerful reminder that Duchenne is not only a childhood condition - and that access, support and opportunity matter at every stage of life.

As Jack puts it:
“You can study, you can work. At least, you need to try.”

This weekend, as we carry the weight for 79 hours, we’re carrying it for people like Jack - and for a future where every person living with Duchenne has the opportunity to build the life they want.

This is why we Do It For Duchenne. ❤️

Meet Darby. đź’™Darby is 8.He loves gaming with his friends, riding his quad bike and scooter, playing sport, getting outdo...
04/09/2026

Meet Darby. đź’™

Darby is 8.

He loves gaming with his friends, riding his quad bike and scooter, playing sport, getting outdoors and flying around on the biscuit behind the boat. He’s sensitive, loving and still very active.

Darby was six when his family first noticed something wasn’t quite right. He was struggling to learn to ride his bike and finding it harder to keep up with the other kids when running at school.

Blood tests showed extremely high levels of creatine kinase. Further testing confirmed the diagnosis his family never expected: Duchenne muscular dystrophy.

Today, Darby’s family is trying to give him the biggest, fullest childhood they can. That means camping trips. Holidays. Sport. Adventures. Making memories.

But Duchenne is always there in the background.

Every day brings a balancing act between encouraging Darby to run, play and join in - and knowing his muscles fatigue differently and need to be protected.

His mum says even birthdays feel different now.
“You’re grateful to celebrate another year, but there’s a sadness that comes with it that we never felt before his diagnosis.”

And then there is hope.

Research is progressing. New treatments are being developed and studied. Families are coming together. And more people are learning what Duchenne means for boys like Darby.

That’s why Darby’s family is taking part in Do It For Duchenne.

From 4–7 September, we’re wearing weights on our wrists for 79 hours - carrying a small piece of the extra weight boys and young men with Duchenne live with every day.

For Darby. For his childhood. And for his future. đź’™

Hit $500 raised and unlock our limited-edition I ❤️ someone with Duchenne hat! 🧢❤️Only 50 available, so keep those donat...
01/09/2026

Hit $500 raised and unlock our limited-edition I ❤️ someone with Duchenne hat! 🧢❤️

Only 50 available, so keep those donations coming!

Every dollar raised helps Duchenne Australia support families, advocate for change and improve the lives of people living with Duchenne. đź’Ş

3 DAYS TO GO! ❤️This Friday, we’re putting on the weight and carrying them for 79 hours for Do It For Duchenne.79 hours ...
31/08/2026

3 DAYS TO GO! ❤️

This Friday, we’re putting on the weight and carrying them for 79 hours for Do It For Duchenne.

79 hours to start conversations.
79 hours to raise awareness.
79 hours to stand with people and families living with Duchenne.

Haven’t signed up or don’t have time to take on the challenge? You can still make a difference. Donate to Do It For Duchenne and help support Duchenne Australia’s work for our community.

However you get involved, you’re helping us carry the weight. ❤️

Head to www.DoItForDuchenne.com.au to join us or donate.

Meet Henry. This is why we wear the weight. ❤️Henry is three. He loves dancing, trucks, diggers, animals and being outsi...
31/08/2026

Meet Henry. This is why we wear the weight. ❤️

Henry is three. He loves dancing, trucks, diggers, animals and being outside. He’s bright, cheeky and incredibly determined.

Just before his third birthday, Henry was diagnosed with Duchenne.

Today, he still runs, plays, dances and laughs. But Duchenne is progressive, and his family celebrates what Henry can do today while quietly wondering how long he’ll be able to keep doing it.

This Friday, we put on the weight for 79 hours.

When the weights feel heavy, think of Henry.

For us, the weights come off after 79 hours.
For families living with Duchenne, the weight doesn’t.

This is why we wear the weight. ❤️

A little DIFD update… and a first look at our limited-edition 2026 weights. 🖤Our original red weights have been caught u...
29/08/2026

A little DIFD update… and a first look at our limited-edition 2026 weights. 🖤

Our original red weights have been caught up in significant international shipping delays following severe weather and port disruption in China. With Do It For Duchenne just one week away, we weren't prepared to leave it to chance.

So we found another way.

We've sourced weights locally in Australia, and they'll be leaving Sydney via Express Post on Monday.

If you've qualified for weights, keep an eye on your letterbox next week! And if they don't quite reach you before we begin at 9am Friday, don't wait for them - grab, borrow or source a pair of wrist weights and start with us. Your official DIFD pair will still be on its way.

79 hours. One community carrying the weight together.

Bring on Friday. ❤️

WE NEED YOUR VOICES 🗣Real change for the Duchenne community won’t happen through one organisation, one family or one voi...
19/08/2026

WE NEED YOUR VOICES đź—Ł

Real change for the Duchenne community won’t happen through one organisation, one family or one voice.
We need to come together.

Duchenne Australia is led by parents and family members, and advocacy is a huge part of what we do. But when we speak to government, decision-makers and those shaping policy, our voice is so much stronger when our community is standing alongside us.

And there is something you can do RIGHT NOW!

Australia is currently considering important reform to its Health Technology Assessment (HTA) system - the system that helps determine how new medicines and therapies are assessed and ultimately accessed by Australian patients.

For Duchenne families, with new and emerging therapies on the horizon, this matters enormously.

With help from our friends at Rare Voices Australia we've created a draft advocacy letter that you can download, personalise and send to your local and federal representatives.

👉 Download the HTA advocacy letter via this link https://linktr.ee/duchenneaustralia

Tell them who you are. Tell them about your family. Make sure the people making these decisions know who they are representing and why timely and equitable access to treatment matters.

If you're a parent, family member or member of our Duchenne community who would be willing to help us advocate - whether that's contacting MPs, attending meetings, sharing your story, responding to consultations or simply adding your voice when it's needed - we want to hear from you.

đź“© Get in touch with Duchenne Australia and let us know you want to be involved.

We don't all need to be in the same room to stand together.

But we do need to be heard. đź’™

Address

Wellington Street
Perth, WA
6005

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