That’s why we’re here with information, support programs and a community that’s tailored to your needs at every step of your journey.

We’ve been part of the NSW neuromuscular community for over 60 years. For you, this means:

  • Specialised support and services
  • Respect for your specific needs
  • Planning for your future as your condition changes

Which means you can feel less alone and anxious for the future, knowing we’ll be here with the support and community you deserve, at every stage of your life.

You can download our Organisation Overview for further information about who we are and what we do.


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