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 …
READ MOREHealth, Support & Wellbeing
Stories from people with neuromuscular conditions living the life they choose.
Managing support workers, and learning to be a boss - it can be a learning curve for many!
Thinking about living independently? Or maybe you're housing-curious? Come here to find out info on independent living, accessible housing and more!
You don't need to go through a mental health crisis alone, there are services and supports out there for everyone, including you.
Stories, resources and tips on dealing with the pandemic.
Living with NMCs
Sarah Jenkins’ passion for drone photography was kindled during COVID lockdown. Now she’s an award winning creative.
By Adelaide Miller, ABC News. Posted Sun 15 May 2022. The sun beats down on …
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Escape from the Country
Hi, I’m Jack Wason, I’m 19, I have Duchenne Muscular Dystrophy and grew up on …
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Living to Live
After being given the opportunity to have a go at shooting and subsequently becoming part …
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Nutrition in DMD
A range of resources and videos on nutrition for people living with Duchenne MD, including …
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Is this YOUR Carer?!
I am Frances Turner aged 81 living in a house in Sydney’s Inner West and …
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The Loop
When it comes to useful resources for people living with neuromuscular conditions, The Loop is …
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Neuromuscular Fact Sheets
To address some of the issues identified by people with neuromuscular conditions in getting appropriate …
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Growing Up with Spinal Muscular Atrophy
Maija, a young girl in New Zealand talks about her life with SMA, and the …
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Living his best life
Dr Phil interviews 17 year old Jake and his Mum about not letting Duchenne Muscular …
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Advice From Strangers
I was catching the train through the inner west of Sydney a few weeks ago, …
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Don’t go down without a fight
Muscular Dystrophy Queensland created a platform for people in the neuromuscular community to share their …
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Breath of Fresh Air
For a long time I had known that the likelihood of needing nocturnal ventilation was …
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Living a Full Life with Muscular Dystrophy
This video from Canada is about a man with Becker MD, who challenges society’s assumptions …
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Living with Dermatomyositis
Welcome. My name’s Rowena Newton and I’m a 40 something wife, mother of two children …
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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 …
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Living with SMA
My name is Ellie Robertson and I am a woman living with Spinal Muscular Atrophy …
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8 days a week – Support Workers and How I Learned to Be the Boss
Support workers. I don’t know about you, but sometimes I feel as though they are …
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Team Connor – How we parent our child with Myotonic Muscular Dystrophy
An interview with Nikki Rabold-Cowley Can you tell me a little about yourself and your …
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Finding my way, with CMT
Living with Charcot Marie Tooth Syndrome (CMT), a type of neuromuscular disease, can be seen …
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Living with Inclusion Body Myositis
My name is Gordon Osmond, I am a retired acrylic and oil artist and I …
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Kids meet a guy with Muscular Dystrophy
This cute video from America features Amin Lakhani talking frankly to kids who are curious …
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Fashionably yours
This video features a young woman named Ellie DP, from Essex, UK. She is a …
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Normal, Normal
Philip Hojgaard-Olsen is a 19 year old Australian whose biggest dream is to move out …
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Peter Dalrymple – Mind over Muscle
“Mind Over Muscle” is a biographical short film by the late Peter Dalrymple, chronicling his …
READ MORESupport Workers
Laughter really is the best medicine
Hi, I’m Marie 😊 I want to share my story and recent experiences of first-time …
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Worker Screening for Self-managing participants
The NDIS has produced a number of guides on how to screen support workers for …
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Escape from the Country
Hi, I’m Jack Wason, I’m 19, I have Duchenne Muscular Dystrophy and grew up on …
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Grow Bold
Pete Timbs talks with his co-host Tristram and his support worker Dan Conaghan. Tristram is …
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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 …
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8 days a week – Support Workers and How I Learned to Be the Boss
Support workers. I don’t know about you, but sometimes I feel as though they are …
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The Journey towards Self-Management
Back in 2007 I worked as a research associate on an evaluation of the pilot …
READ MOREIndependent Living
Accessible Housing options
Housinghub.org.au is a national website that advertises properties for people with disability. It is free …
READ MOREMental Health
Online Grief Information Sessions
Online Grief Information Sessions with two Grief Counsellors During times of crisis many of us …
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Disability Royal Commission – Counselling and support service
Counselling and support for people affected by the Disability Royal Commission Relationships Australia NSW is …
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Seek Help for your Mental Health
Muscular Dystrophy News is a US based digital news publication dedicated to offering comprehensive daily …
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Waiting for your story
That’s right, if you’re interested in this topic, you might have something to say about …
READ MORECovid Collective
Surviving Covid-19 when you live with SMA
An extract from the diary of Carolyn Campbell-McLean Dear Diary, Day 1 – Feeling sick …
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Covid-19 Hub from People with Disability Australia
People with disability face specific challenges during the COVID-19 pandemic. People with Disability Australia has …
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Coronavirus (COVID-19) information for people with disability
Head to the NDIS Commission website for links to updates about COVID-19 and resources for …
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Omicron wreaks havoc on NSW’s vulnerable
Ellie Robertson has one simple question. The 53-year-old Sydney woman lives with spinal muscular atrophy …
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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 …
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As a disabled person trying to ‘live with’ Covid in Australia, every day is a game of figuring out who is least likely to kill me
I’m the disabled guy on several committees, advising governments what to do to keep people …
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Woman living with muscular dystrophy forced to spend $1,300 on rapid antigen tests for in-home carers
It’s not easy to quantify the cost of the Omicron wave to Carolyn Campbell-McLean, but …
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COVID ‘Freedom Day’ is a terrifying prospect for some people. I am one of them.
I recently received a text from a friend asking: “Are you excited for freedom?” A …
READ MORETherapies
Waiting for your story
That’s right, if you’re interested in this topic, you might have something to say about …
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