Muscular Dystrophy NSW is a membership-based not-for-profit organisation supporting and connecting people with neuromuscular conditions (muscular dystrophy) and their families. There are over 13,000 people living in NSW with a neuromuscular condition, and MDNSW are on a journey to support these people live the life they choose!
For more information about what we do and the services we provide for the neuromuscular community see our website mdnsw.org.au.
Muscular Dystrophy refers to a group of 70+ genetic neuromuscular disorders characterised by progressive muscle degeneration and weakness. It is caused by mutations in genes that play a crucial role in the structure and function of muscle fibres.
Neuromuscular conditions can affect people at different stages of their lives and onset of symptoms can occur from birth to adulthood. The severity, onset, and progression of Muscular Dystrophy can vary widely depending on the type of condition, and often results in progressive deterioration of muscle strength and function, loss of mobility, pain, fatigue and more.
You can learn more at our website.
Here at MDNSW, we are here for our members at each stage of life, including in times of transition when they might not know what to expect next. We maintain a continuity of support, providing information and advice along the way, throughout all stages of life.
What makes us different from other providers is that we provide services exclusively for people living with muscular dystrophy or other neuromuscular conditions, allowing us to focus on their specific needs and anticipate future supports.
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.
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.
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 days.
Find Out More
MD Factsheet MDNSW Factsheet MDNSW Website
Read stories straight from the MD community on The Peer Collective to learn more about a range of topics like accessible travel, assistive technology, interesting podcasts and personal anecdotes.
