• WELCOME TO
    MUSCULAR DYSTROPHY NSW

    Information, support and community for people living with neuromuscular conditions.

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  • GET THE INFORMATION YOU NEED TO UNDERSTAND YOUR CONDITION

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  • GET SUPPORT PROGRAMS TAILORED TO YOUR SPECIFIC NEEDS

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  • JOIN A COMMUNITY OF PEOPLE WHO GET YOU, AND LOOK FORWARD TO FEELING CONNECTED

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  • LISTEN TO JOSHUA’S STORY AND HELP HIM AND OTHER KIDS WITH MD LIVE THEIR BEST LIVES!

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    • Specialised support
    • Connect to your community
    • Live the life you choose

    FINDING A SERVICE PROVIDER AND
    COMMUNITY THAT GETS YOU CAN BE HARD

    You deserve a provider that understands your neuromuscular condition, so you can get tailored information, support programs and connection to the neuromuscular community.

    You deserve to live the life you choose. Let us support you to make that happen.

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    Specialised support

    We understand your neuromuscular condition, and we’re here to help you find tailored support as your condition changes over time.

    Connect to your community

    Join a community of people who understand you and what you’re going through. You’ll laugh, share, and feel supported knowing you’re not alone..

    Live the life you choose

    We’re here to connect you with the tools, services, community and programs you need to live the life you choose. We’re here to listen and deliver – not tell you how to live.

    WE UNDERSTAND THAT A NEW DIAGNOSIS OR A CHANGE IN YOUR CONDITION CAN MAKE YOU FEEL ANXIOUS AND ALONE.

    We’re here to support you.

    • Over 60 years of experience
    • Tailored support for all neuromuscular conditions
    • Registered NDIS provider
    • Over 2000 official members
    • Support for people across NSW

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    Who we are

    HOW OUR COMMUNITY FEELS ABOUT…

    Adventure Camp:

    “The Adventure Camp experience ended up being such a positive opportunity for John to develop independence and this was something I really wanted for him. Not only did he make new friends and enjoy new experiences like playing in the sand at the beach and abseiling, but he also developed new independent skills that he is still doing at home now like brushing his teeth every day and getting himself dressed.

    He’s more confident and we both understand that things won’t fall apart if I’m not around. John can’t wait to go back to Camp next year and I am so grateful to MDNSW for making this life-changing experience for him possible.”

    - Effie, John’s Mum

    Peer Connect Retreat:

    “Being surrounded by a group of people who understood and supported each other gave me the confidence I needed to get through. And they made me laugh and feel the happiest I’d felt in a long time. I forgot about my disability and just had fun.”

    - Marie

    Girl Power (Peer Connect):

    “I think the best thing about Peer Connect is being able catch up with my friends more often than ever before… it’s really easy to attend because it’s all online and I don’t have to travel anywhere to get to it. It’s also great that it’s open to people all over NSW so we can connect with people who live far away.”

    - Jamieson

    Adventure Camp:

    “Daniel had a fantastic time, caught up with old friends, made new ones, was completely silly and even managed to miss his family, just a little. When he  returns from camp each year we see a massive growth in self-esteem and confidence. Words cannot describe what this week away means to him.”

    - Joanne, Daniel’s Mum

    Peer Connect Myotonic Meet Up group:

    “You are not alone. There are people in same boat, who are going  through same problems and share how they are getting through.”

    - Anonymous participant

    Summer Camp:

    “As a full-time carer for Kamal, as well as caring for my other sons, we rely heavily on financial support from the government just to get by. We don’t have modified transport for Kamal. We simply can’t afford it. This is where the people at Muscular Dystrophy NSW have really gone above and beyond in their support care for us, covering the cost of transport for Kamal to and from camp, making it possible for him to go each year. No transport would mean no camp for Kamal and I just couldn’t bear seeing how sad and disappointed he’d be. The help we get from MDNSW is beautiful, it’s really nice, and is making a huge difference in a boy’s life. You are getting these kids to a very happy place!”

    - Dalal, Kamal’s Mum

    Support Coordination:

    “The support with Ganesh (MDNSW Support Coordinator) has been God-sent. Without him it would be extremely hard to work with the NDIS. Whenever there are any problems whether it be with the NDIS, my therapy, or repairs, Ganesh is always there to sort it out.

    He explains things so well and makes it so easy for me to understand; he gives me courage going forward. Muscular Dystrophy NSW puts the client first. They have always been there for me throughout all the years. Without them, I would be lost.”

    - Samson

    YOU DESERVE TO LIVE THE LIFE YOU CHOOSE.

    A lot of people in NSW don’t know who to turn to when they’re diagnosed with a neuromuscular condition, or when there’s a change in their condition.

    At Muscular Dystrophy NSW, we’re here to connect you to a community of people who get what you’re going through, and offer you support programs that are built to match your needs.

    So the next time you’re lying awake, wondering if anyone understands what you’re going through, you’ll know that the Muscular Dystrophy NSW community is here for you.

    READ MORE ABOUT US

    HERE’S HOW TO GET INVOLVED WITH ALL OUR GREAT SERVICES, PROGRAMS AND COMMUNITY:

    1
    Contact us, or click “get started”, and tell us about yourself.
    2
    We’ll guide you to the right information.
    3
    You’ll feel supported, knowing you’re now part of a community that understands and welcomes you.

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