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.

04/04/2026

Happy Easter 🐰💙

Wishing all of our Duchenne Australia families a day filled with love, laughter (and a lot of chocolate 🍫).

We’re so grateful to have such a strong, supportive community - today and every day.

19/03/2026

We are completely blown away💛

A huge thank you to Geoff and Liane Stalley, who turned their love for their grandson into something truly extraordinary - raising an incredible $31,000 for Duchenne Australia through their beautiful “Spritzed for Duchenne” garden fundraiser.

Bringing together over 100 guests, with live music, generous donations and a whole lot of heart, this event is a powerful reminder of what community can do when people come together for a cause that matters.

Your passion, generosity and determination to make a difference for families living with Duchenne is beyond inspiring.

Because of you, we can continue to support families, drive research and create real impact.

Thank you for stepping forward 💛

11/03/2026

Because of your support, families facing Duchenne aren’t navigating the emotional journey alone.

Our partnership with the The Royal Children's Hospital, Melbourne Neuromuscular team is helping embed dedicated psychological care for boys with Duchenne and their families - support that simply wouldn’t exist otherwise.

This is more than funding a role.
It’s building capacity, supporting families, and changing lives. 💙

09/03/2026

Want to run the City2Surf for Duchenne Australia?

We’re looking for a team of Duchenne Charity Superstars to take on the City2Surf this year 💙

By committing to raise $1,000, you’ll unlock exclusive Charity Superstar benefits including:

🏃 Free race entry
🏅 Charity Superstar medal
🎽 Personalised race bib
🌊 Start in the Charity Wave
✨ Plus the support of Team Duchenne Australia

Most importantly, you’ll be helping fund programs that support Australian families living with Duchenne muscular dystrophy.

You can run, walk, jog or stroll the iconic 14km from the Sydney CBD to Bondi Beach — every step makes a difference.

👉 We’re currently taking expressions of interest for Team Duchenne.

Comment CITY2SURF or send us a message if you’d like to join the team!

28/02/2026

Rare diseases may be individually uncommon - but together they affect over 300 million people worldwide, along with their families and carers.

Equity means where you live should not determine the care you receive.
It means earlier diagnosis, access to specialist care, inclusion in trials, and fair access to therapies.

Progress happens through global collaboration.

Duchenne Australia stands alongside the international rare disease community to drive awareness, equity and meaningful change.

Because rare should never mean overlooked.

13/02/2026

This week Duchenne Australia have been at TREAT-NMD in Lisbon, Portugal, contributing to global discussions, shaping the future of Duchenne care and research.

As a parent-led organisation, our advocacy is grounded in lived experience and sector leadership - informing conversations on clinical trial design, standards of care, earlier diagnosis and equitable access to emerging therapies.

In a rapidly evolving global landscape, challenges remain. What’s clear is that collaboration across researchers, industry and patient organisations is essential to accelerating progress.

We’re engaging directly with international leaders to ensure Australian families are represented in global decision-making.

Duchenne Australia remains committed to active, constructive collaboration to move outcomes for the Australian community.

10/02/2026

Grateful to attend New Horizons with and be part of a truly global Duchenne conversation 🌏

A powerful takeaway was the momentum around new and emerging therapies - honest discussions about what’s on the horizon and how we prepare families for what’s ahead.

Just as important was the emphasis on collaboration and listening to community voices. Families, clinicians, researchers and advocates all learning from one another and shaping the future together.

09/02/2026

It’s time to put on your running (or walking) shoes in support of Duchenne Australia.

Join our team for this year’s HBF Run For A Reason. Happening on Sunday 24th May, this year is set to be bigger and better!

Registrations open February 3rd, with early bird pricing available for a month. So, sign up today to take advantage of this offer and to start raising much needed funds for Duchenne Australia.

Can’t attend? Share our fundraising page with your family, friends and support networks or consider a donation – every dollar helps Duchenne Australia work to improve the lives of people with Duchenne and their families.

https://runforareason26.grassrootz.com/duchenne-australia

04/02/2026

🧠 Behaviour in Duchenne – Free 4-Part Webinar Series

We’re excited to share a new online webinar series, delivered in partnership with Duchenne Australia and Duchenne Muscular Dystrophy Therapeutic & Behavioural Consulting.

Living with Duchenne can bring emotional and behavioural challenges alongside the physical — and families shouldn’t have to navigate this alone.

Across four fortnightly sessions (Feb–April), we’ll explore:
✨ How Duchenne impacts behaviour and the brain
✨ Emotional regulation, anxiety, fatigue and function
✨ Practical, everyday strategies that really work
✨ Collaborative approaches with schools and support teams

This is a supportive, judgment-free space for families and carers, with practical tools you can use straight away.
🗓 Starts 19 Feb (4 sessions, every 2 weeks)
💻 Online via Zoom
🎟 Register once to attend any or all sessions
📼 Recordings available for registered participants

Because Duchenne affects more than muscles. 💙

👉 Register now: https://us02web.zoom.us/webinar/register/WN_kb7H_l5hTzqXUUIaxjifyQ #/registration

02/02/2026

This weekend, our community is doing something pretty special 💙

Friends of Duchenne Australia are hosting their very own fundraising event - and they’ve opened their Silent Auction to all of us. The generosity behind it has been incredible, with an amazing calibre of prizes up for grabs.

From luxury stays and spa experiences to beautiful wines, vouchers and unique experiences - there truly is something for everyone.

Every bid helps fund vital care and support for children living with Duchenne and their families across Australia.

Even a small bid makes a big difference.

👉 Jump in, place a bid, and help change lives: https://app.galabid.com/duchennesummerspritz/items

27/01/2026

Sarepta Therapeutics have announced that they are seeing positive results from their EMBARK trial, which is studying the effects of Elevidys on patients with Duchenne.

So far, three years after treatment, the 52 boys who are now around the age of nine-year-olds are displaying a significant decrease in the progression of Duchenne.

To the boys and their parents who are taking part in this research, thank you. Your participation will hopefully improve the lives of the many people with Duchenne.

More information is available via the press release: https://investorrelations.sarepta.com/news-releases/news-release-details/sarepta-announces-positive-topline-three-year-embark-results
sareptatherapeutics

14/01/2026

This week, Solid Biosciences shared a major update on their Duchenne gene therapy, SGT-003 - and for Australian families, this really matters.

The INSPIRE Duchenne trial has now dosed 33 boys aged 1–10, with the therapy continuing to be well tolerated and showing encouraging heart and muscle biomarker signals.

Most importantly for our community, Solid has now activated the first Australian trial sites as part of the global Phase 3 IMPACT Duchenne study - meaning Australian boys may have the opportunity to access this investigational gene therapy here at home.

We are hopeful and encouraged by this progress, while also recognising that clinical trials come with important questions, responsibilities and risks. Our role is to make sure families are informed, supported and empowered as these opportunities emerge.

Duchenne Australia has worked closely with Solid Biosciences over many years as part of our commitment to ensuring the Australian community stays connected to global research and trial opportunities. If you have questions or want to understand what this update may mean for your family, we’re here to help - please reach out at [email protected].

We’re watching this closely and will continue advocating for equitable, fast and safe access to new therapies for all Australians living with Duchenne. 💛🧬

Press Release: https://investors.solidbio.com/news-releases/news-release-details/solid-biosciences-provides-2026-outlook-underscoring
Community Letter: https://www.solidbio.com/letter-to-the-duchenne-community-jan2026/

Address

Wellington Street
Perth, WA
6005

Website

http://duchenneaustralia.org/

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