Muscular Dystrophy Foundation Australia

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Muscular Dystrophy Foundation Australia

National body for Muscular Dystrophy in Australia, aiming to achieve a united advocacy, awareness and fundraising platform on behalf of State entities.

04/09/2025

On International Day of Charity, we are reminded of how little acts can go a long way to making the world a better place.

This year’s theme is “call the world to act with compassion and solidarity”. It encourages us to treat those around us with kindness and care, and to come together to achieve the same goals.

We are also reminded of the work of charity and not-for-profit organisations that assist our most vulnerable community members.

If you would like to donate to the work that Muscular Dystrophy Foundation Australia does, you can do so via our website.

Not in a position to donate, that’s ok, you can support our cause by sharing our story or reach out to your local state/territory neuromuscular organisations to volunteer.

Together let’s come together and create some kindness and change in this world!

https://mdaustralia.org.au/donations/online-donation/

[Image description: An icon of three people putting hearts in a box with the Muscular Dystrophy Foundation Australia logo and the words “International Day of Charity” with a donate now button.]

17/07/2025

In October 2024, the Government put a transitional rule in place for the NDIS Supports rule. The rule created a list for what supports you could spend your NDIS funds on and what you cannot spend your funds on. A list of the current NDIS supports is available on the NDIS website (https://ourguidelines.ndis.gov.au/would-we-fund-it/what-does-ndis-fund).

The rules now need to be updated. MDFA in partnership with our state member organisations will be telling the government what we think. We want to hear from people in our community about your experience of the new rules about NDIS supports.

You can reply here in the comments, send us a direct message or email Rachel.Spencer@mdaustralia.org.au with your comments, stories, ideas or to make a time to chat and share your experience.

If you want more information or a bit more direction with how to respond check out Summary paper (https://engage.dss.gov.au/wp-content/uploads/2025/06/ndis-supports-rules-consultationsfinal.pdf) and the questions on page 4.

All responses welcome no matter how short, long, or out there! We just need to hear from you by Thursday 24 July. Thanks.

01/06/2025

The work of the Muscular Dystrophy Foundation Australia extends beyond advocacy and policy development behind the scenes. It also involves actively representing the neuromuscular community and engaging with the efforts of state and territory neuromuscular organisations.

In May Rachel, our National Advocacy Lead, participated in the Neurological Alliance Australia's workshop, contributing to the development of a blueprint for a National Action Plan for Neurological Conditions.

Rachel and Tait Jenkins, one of our Board Members, also took part in Muscular Dystrophy NSW’s Big Red Roll and Stroll. This annual event not only raised funds and awareness of the neuromuscular community, but it was also a great opportunity for the community to catch up.

Have an event that aligns with the mission and purpose of Muscular Dystrophy Foundation Australia? Reach out to us to see how we can take part!

[Image description: A graphic with four images of a group of people taking part in the Neurological Alliance Australia's workshop and Big Red Roll and Stroll all smiling. The words “May Recap” with the Muscular Dystrophy Foundation Australia logo are in the middle left section.]

27/05/2025

In May, our National Advocacy Lead Rachel and Carolyn Campbell-McLean from Muscular Dystrophy NSW took part in Neurological Alliance Australia's workshop, focusing on developing the blueprint for a National Action Plan for Neuro Conditions.

It was great to connect with like-minded organisations and we look forward to seeing what the future holds!

26/05/2025

Here at Muscular Dystrophy Foundation Australia we believe it’s important to focus on the present and the future, including involving and supporting our next generation of neuromuscular leaders. As part of this commitment, we have recently welcomed Jack Rowland to the team as our Policy and Advocacy Intern.

Jack Rowland has Becker's Muscular Dystrophy and is passionate about improving not only his own health but also the health of others. In his spare time, when he’s not pursuing a Master of Public Health or completing advocacy work especially in the areas of disability, health, and the environment, he enjoys the ocean, reading, connecting with friends, and regularly incorporating ice baths and saunas into his wellness routine.

Head to our website to learn more about Jack as well as the rest of our team!

https://mdaustralia.org.au/personnel/jack-rowland/

[Image description: A photo of Jack Rowland in front of a conference screen. Below the photo, text reads: “Meet Jack Policy and Advocacy Intern” and a summary of the caption. At the bottom is the Muscular Dystrophy Foundation Australia logo.]

22/05/2025

Muscular Dystrophy Foundation Australia is proud to support the first World Collagen 6 Myopathy Day!

With many different types of Collagen 6-Related Myopathies from Ullrich-COL6, often the most severe and early-onset, intermediate forms, and Bethlem-COL6, often the least severe and late-onset, days like World Collagen 6 Myopathy Day play an important role in raising awareness about neuromuscular conditions.

Learn more about Collagen 6-Related Myopathies on Muscular Dystrophy Foundation Australia’s neuromuscular resource The Loop or to get involved in the day visit the COL6 website. https://www.col6.world/

[Image description: Large text in white and blue that says, "I SUPPORT collagen 6 patients and their families, hoping to see steps forward in scientific research." At the bottom, there is a white banner with two feet and the words "1st WORLD COL6 MYOPATHY DAY" with the website link: www.col6.world.]

19/04/2025

The team at MDFA wishes you all a happy and safe Easter.

This time of year is an opportunity to connect with loved ones, reflect, and take part in traditions. Whether you’re enjoying a quiet weekend, getting creative with Easter activities, or simply taking a well-earned break, we hope your Easter is filled with comfort and connection.

[Image description: In the top centre the words say “Happy Easter”. Below are graphics of easter eggs and the MDFA logo is in the bottom left corner.]

09/04/2025

Rare Voices Australia (RVA), the national peak body for Australians living with a rare disease, is seeking expressions of interest for its Rare Disease Disability Project Stakeholder Reference Group (SRG). This two-year initiative, concluding in December 2026, focuses on enhancing peer support and self-advocacy for individuals with rare disease disabilities.

Role of the Stakeholder Reference Group include:
• Share their lived experience and help to identify gaps to establish priorities
• Help to codesign the Rare Disease Disability Toolkit
• Help oversee program quality and evaluate effectiveness

Stakeholder Reference Group members will be expected to:
• Participate in several activities, including online discussions, meetings, interviews/surveys, and workshops
• Review and comment on documents and resources
• Contribute up to 15 hours a year for the 2-year project, for which you will be remunerated (paid).

At least 50% of SRG members will have direct lived experience, with the remainder comprising family members, carers, and experts.

Expressions of interest close on Sunday, 13 April 2025 with more information also available on Rare Voices Australia (RVA).

https://rarevoices.org.au/expressions-of-interest-rare-disease-disability-project-stakeholder-reference-group/

[Image description: A pale cream box on a pale red background with red arch lines with the image of a laptop and red tea cup. The text below says “Expressions of Interest: Rare Disease Disability Project Stakeholder Reference Group” with a summary of the first paragraph in the caption.]

17/03/2025

Ever wonder who the person behind Muscular Dystrophy Foundation Australia’s social media is? Introducing you to Amy Evans!

Amy is the team’s marketing consultant, bringing her lived disability experience to Muscular Dystrophy Foundation Australia’s communication strategy and content.

Diagnosed with Nemaline Myopathy, a rare neuromuscular condition, Amy’s digital marketing agency specialises in social media and website content as well as accessible marketing, a topic that Amy is very passionate about as she strives to make the world more inclusive and accessible, including in the digital space.

Learn more about Amy, our team and the work we do on our website: https://mdaustralia.org.au/our-team/

[Image description: A photo of a lady in a wheelchair wearing a VPAP mask smiling at the camera holding a phone with a laptop in front of her. Above the image it says “Meet The Team” and underneath are the words “Meet Amy” with a summarised version of the text in the caption alongside the Muscular Dystrophy Foundation Australia logo.]

10/03/2025

Have you heard of The Loop - Your Neuromuscular Resource Hub?

As part of Muscular Dystrophy Foundation Australia’s commitment to representing the interests of more than 40,000 Australians living with muscular dystrophy, and similar, rare conditions, as well as empowering individuals with neuromuscular conditions to live their lives to the fullest potential, The Loop website was formed.

Proudly created in collaboration with the neuromuscular community and state-based Muscular Dystrophy organisations, The Loop is designed to support and empower people living with a neuromuscular condition, their families and support network.

From resources including informative pages on individual neuromuscular conditions to support organisations and services as well as stories from community members, The Loop is not only valuable for people and families who are recently diagnosed, but also for anyone who has a neuromuscular condition or who is looking to support a person with a neuromuscular condition.

Visit The Loop today: https://theloopcommunity.org/

[Image description: A white desk and computer screen showing The Loop website’s home screen with The Loop logo above.]

06/02/2025

When it comes to families that have a child with a neuromuscular condition it’s often not just the child with a disability that is affected but their siblings as well.

Siblings Australia and Kaleidoscope Focus have recently launched their Life Changes workshops. These workshops are designed to empower siblings and people with disabilities to help strengthen their family relationships.

These free workshops cover:
✅ Understanding rights
✅ Advocacy skills
✅ Navigating challenges
✅ Self-care & resilience
✅ Action planning for the future

Open to ages 16+, this program equips you with tools to support people with disability & their siblings with confidence!

MDFA is also proud to be associated with our National Advocacy Lead Rachel, a member of the Project Reference Group.

They are currently accepting Expressions of Interest from both siblings and people with disability, with more information and registration available on their website.

https://siblingsaustralia.org.au/services/life-changes/

[Image description: The words “Life Changes Workshops” above the words “Free workshops designed to empower siblings and people with disabilities to help strengthen their family relationships.” The background is an image of two children chilling on the couch with a red filter over the top.]

29/01/2025

Hello from the Muscular Dystrophy Foundation Australia team! A great deal has been happening behind the scenes, particularly in the NDIS and medical advancement space, so we feel it is the perfect time to reintroduce the remarkable team that makes all of this possible.

Rachel Spencer is the newest member to join the MDFA team and she brings her wealth of knowledge as our National Advocacy Lead.

Rachel is a passionate disability rights advocate. In 2005 Rachel joined Muscular Dystrophy NSW, developing and delivering the Care for Carers program. Rachel has remained connected to the neuromuscular community and is committed to ensuring the rights of our community are realised.

Learn more about Rachel, our team and the work we do on our website: https://mdaustralia.org.au/our-team/

[Image description: A photo of a lady smiling at the camera with the beach behind her. Above the image it says “Meet The Team” and underneath are the words “Meet Rachel” with a summarised version of the text in the caption alongside the Muscular Dystrophy Foundation Australia logo.]

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About the Foundation

Muscular Dystrophy Associations have been serving people with neuromuscular disorders in Australia for over 50 years, the first established in South Australia on 4th August 1954. Since then associations have been established in each state, including: • New South Wales • Queensland • South Australia • Tasmania • Victoria • Western Australia

In the Northern Territory services are provided by MD South Australia. We are also working with families in the ACT to establish a support organisation for all neuromuscular conditions.

Muscular Dystrophy Foundation Australia was established in 2005 to increase cooperation among state-based muscular dystrophy associations. Muscular Dystrophy Foundation Australia took a significant step in May 2008 in appointing its first CEO.