Community stories

Stories from people like you about the things that help you in your daily life. From accessible travel to managing support workers, we’ve got you covered. 

In the Midst of a Pandemic, Time is Precious for Those with a Progressive Condition

People living with a disability can have altered, or even shortened time limitations. As society’s collective sense of urgency to seek new experiences, goals, growth and connections builds, those with...

There’s no ‘I’ in Team: Lessons in Creating Your Own Dream Team

A self-directed approach enables me to recruit and choose my own team of staff who assist me to live in my own home. After 25 years of independent living and using a wide range of services, staff and ...

Team Connor – How we Parent our Child with Myotonic Muscular Dystrophy

I’m 37, and work as a clinical nurse specialist in a neonatal ICU. My husband Peter and I have 5 children, ranging from 18 to our little Connor who is now 2.5 years old. We both value family and frien...

Gatecrashing MD – Living with an Undiagnosed, Adult-Onset Neuromuscular Condition

When I walked out of the office of an Ad Agency in Pyrmont one Friday afternoon, I thought I’d be taking a month or two off work, maximum. I planned to use the time to – fit in more medical appointmen...

Learning and Development – My Story

I began my university journey in 2010 with a Bachelor of Business and Commerce at the university formerly known as the University of Western Sydney. I received mostly credits during my first two years...

The Big Apple of my Eye

After a fairly pleasant 5 hour flight we experienced disorganised chaos at Newark Airport New Jersey….. took 2 hrs to get my chair out at baggage! I was worried my chair had been broken or left in San...

My Quest to Help Other Wheelchair Users to Travel

My name is Scott Green, I’m 19 and I completed the Diploma of Travel and Tourism Management last year at TAFE. I’ve travelled to many places including America, New Zealand and Melbourne.

Laughter Really is the Best Medicine

I’m 46 years-old and live with an undiagnosed and rare form of neuromuscular condition, which causes severe muscle weakness all over my body. I have seen many doctors over the years and there have als...

Jamieson and Dan Head to Tokyo

Jamieson Leeson and Dan Michel have a couple of things in common. Firstly, they were both born with Spinal Muscular Atrophy and, secondly, they will both be representing Australia in boccia at the 202...

The Power of Powerchair Hockey – Three Player Perspectives

Turning up to my very first powerchair hockey, I was instantly hooked by the game. A fast-paced, intensive, and competitive team sport was the thing that I have always longed for. Getting in the sport...

Making Waves in the World of Surf Life Saving: Scott’s Story

Sand, surf and red and yellow flags are probably the first things that come to mind when thinking about Coogee Surf Life Saving Club. But with the Surf Life Saving Training Program, that might just ch...

1996 PhD Scholarship Award Recipient: Clinical Professor Kristi Jones

Professor Kristi Jones was our very first PhD scholarship recipient back in 1996! Now as a professor and Head of Department of Clinical Genetics at the Children’s Hospital at Westmead, MDNSW had the o...

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Phone: (02) 9888 5711

Freecall: 1800 635 109

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Muscular Dystrophy NSW
ABN 11 774 587 436

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Phone: (02) 9888 5711

Freecall: 1800 635 109

Postal Address: PO Box 3071, North Strathfield NSW 2137

Muscular Dystrophy NSW would like to acknowledge the Traditional Custodians of the land on which we live and work, and we pay our respects to their Elders past and present. We extend that respect to all Aboriginal and Torres Strait Islander peoples.

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