Community Stories

This is SMA: Leadership that drives change

Tait’s impact is unmistakable. He’s a leader, an advocate and a tireless champion for people with disability. He also happens to live with spinal muscular atrophy (SMA). Tait’s message to the communit...

This is SMA: Lived Experience, Real Insight

This Spinal Muscular Atrophy (SMA) Awareness month, we’re celebrating the people who redefine what’s possible living with a neuromuscular condition. Carolyn is one of them.

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 ...

Living with Inclusion Body Myositis

My name is Gordon Osmond, I am a retired acrylic and oil artist and I live in West Albury NSW. I have a debilitating neuromuscular condition called Inclusion Body Myositis or IBM.

Breath of Fresh Air

For a long time I had known that the likelihood of needing nocturnal ventilation was pretty high for me, as an adult living with SMA. But like most people I put this in the ‘too hard basket’ for far t...

Advice From Strangers

I was catching the train through the inner west of Sydney a few weeks ago, when a man came up to me and asked why I was in a wheelchair.

A Donors Journey with MD – Giving the Gift of a Donation

My journey began over 40 years ago when through a mutual friend I met my first husband, Martin. Martin was the eldest of 4 siblings who grew up in a loving immigrant family.

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...

Living with Dermatomyositis

My second pregnancy triggered an auto-immune nightmare where my muscles started attacking themselves. However, the first symptoms I noticed was cracked skin on my hands, which was diagnosed as dermati...

Interview with a Grandmother

Anne-Maree Warman’s work at the Teacher’s Mutual Bank, allows her to volunteer for MDNSW as part of the bank’s staff volunteer program. Anne-Maree has kindly agreed to be interviewed about her connect...

Why I Don’t Want You to Feel Sorry for My Child

When you have a child with a disability or special needs, you learn to develop thick skin over time. Life constantly throws you challenges that you somehow – as if possessing crazy superpowers – manag...

Is This Your Carer?

I am Frances Turner aged 81 living in a house in Sydney’s Inner West and Carer to my son Felix aged 51 who has Myotonic Muscular Dystrophy, and two cats. Felix’ 39 year old electrical fitter brother, ...

Making Our Voices Heard

Being a foster child, I have never had a family history to see if there are any inherited medical conditions. From early childhood I was clumsy, had trouble walking (20 months old), I struggled to get...

Taking a Chance on Love

An Interview with Natalie Macaulay. Natalie generously shares her story about how she met and eventually married her partner, Cameron.

Finding My Way, With CMT

Living with Charcot Marie Tooth Syndrome (CMT), a type of neuromuscular disease, can be seen as a challenge, but try living with CMT and being from a culturally and linguistically diverse background! ...

Living with SMA

The Country Life for Me

I’m a 29 year old fellow from a country town called Lansdowne on the Mid North Coast. I grew up on acreage and enjoyed being out in the country, growing up running around the backyard with pets and dr...

Melanie’s Career Takes Off

Applying the skills she learned at Torrens University Australia, Melanie Tran is the co-founder of AbilityMate, a company which uses 3D printing to create custom-made orthoses. She is also a UX Design...

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...

Escape From the Country

All my schooling was completed at the local central school which I caught the bus to everyday. I graduated high school in 2019. My experiences with living in a regional area with a disability were ext...

Starting in a Mainstream High School – MD Style

Let’s talk about high school. As a kid with Muscular Dystrophy, starting high school was extremely daunting. That’s why I’m here to share my experience.

Gaming – My Journey

From a young age I have had a strong interest in gaming. Some of my oldest memories involve watching my older brother and Dad play video games.

My Bali – A Wheelchair Accessible Holiday

When Jaxon Taylor went on holiday to Bali with his family he wrote a blog about the great time he had. Jaxon especially highlights wheelchair accessibility while he was there

地上ヘ (To the ground) – Accessible Japan

I travel with my partner Alison, and on our last trip we took a carer along, who helped us with our luggage mostly, but was on standby for anything else. Alison and I, are a very independent self-cont...

Scooter Adventures in the Land of the Rising Sun

Jamie, his family and his trusty Luggie Super motor scooter travelled to Japan for 3 weeks over Christmas. An ambitious itinerary was set by Jamie, taking in Hiroshima, Kyoto, Nara, Osaka, the Japanes...

Food for the Soul – What NDIS Funding Has Meant for Me

I was diagnosed with a neuromuscular condition at the age of 30 after a pretty normal start to life growing up in Perth, Western Australia. I was actually a good athlete, especially in primary school ...

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...

Italy on Wheels – Fantastico!

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.

More Scooter Adventures on the South China Sea

Jamie, his family and his trusty Luggie Super motor scooter travelled to South East Asia for 2 weeks over summer. They cruised on the Norwegian Jade, taking in Singapore, Thailand, Cambodia, various s...

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...

Christmas Cruising

Jamie Larsen is 18 years old and lives with Bridget (mum), Carsten (dad) and Colonel (an affectionate Golden Retriever). When not occupied with work, school, power chair soccer, basketball and running...

Accessible Aotearoa: Carolyn’s Amazing 3-week Road Trip Adventure!

Cruising Christmas Time – Jamie’s Journey to New Zealand

Jamie Larsen is 19 years old and lives with Bridget (mum), Carsten (dad) and Colonel (an affectionate Golden Retriever). When not occupied with work, school, power chair soccer, basketball and running...

Normal, Normal

Philip Hojgaard-Olsen is a 19 year old Australian whose biggest dream is to move out of home and live independently. But Philip was diagnosed with Duchenne Muscular Dystrophy (DMD), a genetic disorder...

Peter Dalrymple – Mind Over Muscle

My Journey to wear Green and Gold

Growing up as a kid in Australia, many of us dream of the chance to wear the green and gold and represent our nation on the world stage.

Targeting Tokyo – My Journey with Boccia

The True Value of Sport

Getting together with your mates and playing sport is a very Australian thing. From backyard cricket under a scorching summer sun, or playing for your local footy team, most of us have played sports i...

Junior Powerchair Soccer: Roll and Goal!

Years ago, my mum and I had the idea of starting a junior side for Powerchair Soccer to try and get me to join a team sport. We approached NSW Powerchair Football Association and thankfully they were ...

From Golden Sands to Snowy Mountains

Surfin’ Safari

We had seen disabled surfing advertised previously, and when a family member brought it to our attention that it was on near where they live, we decided that we would go. Joshua is always keen to give...

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...

Still Skiing After All These Years

My name is Michael and I’m 57 years old. I have Myotonic Dystrophy type 1 and one of the hardest things to contemplate as I began losing my independence was that I may never ski again.

Nerds Just Like Me

My name is Megan, I am 18 years old and will be 19 in November. I was diagnosed in 2006 with Duchenne Muscular Dystrophy. My brother also had DMD but passed away the year before I was born.

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...

George Gives Powerchair Football a Spin

Camp Made Possible for Kamal

This is fifteen year-old Kamal Sadi’s ultimate dream and ambition for when he grows up; to one day drive a Lamborghini. But, that’s not all Kamal aspires towards. He looks forward to lots of things, l...

Powerchair Football – An Interview with Jaxon Taylor

With the 2021 Sydney powerchair football season set to kick off on Saturday 20th February, Western Sydney Wanderers squad member Jaxon Taylor gave us his thoughts about the sport he loves.

Big Red Roll Ambassador: Meet John

For 9-year-old client John, MDNSW have been integral in supporting him on his journey with Duchenne muscular dystrophy. We recently had the opportunity to sit down with John and his mother Bryony, our...

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...

2018 PhD Scholarship Award Recipient: Samantha Bryen

In 2018, MDNSW awarded the Sue Connor Scholarship, a full-time postgraduate scholarship to qualified candidate Samantha Bryen for her research project: “Translating splicing variants into clinical gen...

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...