About us

Here at a Muscular Dystrophy NSW, we create a community for people living with a neuromuscular condition and their families; one where they can connect, learn, grow, share, have fun and be treated with respect and equality

CHARLOTTE SANGSTER
Chief Executive Officer, Muscular Dystrophy NSW.

What is 
Muscular Dystrophy ?

Muscular Dystrophy is a neuromuscular, genetic disorder which results in the progressive deterioration of muscle strength and function. Muscular Dystrophy is the name of one of many different neuromuscular conditions.

Neuromuscular conditions can affect people at different stages of their lives and onset of symptoms can occur from birth to adulthood, depending on the condition.

The rate of progression and pattern of inheritance also varies depending on the condition and the individual.

For more infirmation about what we do and the services we provide for the muscular dystrophy community see out website mdnsw.org.au.

Neuromuscular conditions are relatively rare, affecting approximately

1 in 1000

people

By that calculation, there are approximately

7,500

people living in NSW with a neuromuscular condition

and

24,600

people Australia wide

Our Services

Camps and Programs

Our camps allow kids with MD to have time outside of the daily challenges of their life in place where they can truly belong. MD camps help build confidence, friendships and independence.

Support Coordination

We have a specialist client services team that provide information and advocacy support for our clients. This can include information support and home visits to advocating for NDIS plans or school and clinic visits.

Family Support

We believe in supporting entire family. We host events to support members of the family with much needed respite. This includes a mum’s retreat and sibling party days.

Peer Connection

MDNSW has a large focus on being a community. We run programs to encourage social cohesion and strong supports. Including our MD retreat, community day, peer connect meet ups.