Introducing the New Diagnosis Companion for parents and carers
May 7th, 2026
There are some life moments many parents remember vividly. The days or weeks after their child is diagnosed with a neuromuscular condition is often one of them.
Life suddenly fills with unfamiliar words, appointments, decisions and questions that don’t always have immediate answers. Many families tell us it feels like being handed a lot of information at once – without a clear sense of where to begin, what matters most right now, or who to turn to for support.
At MDNSW, we’ve listened closely to families about what those early days feel like. Again and again, parents told us they didn’t just need more information – they needed a calm starting point, reassurance that they weren’t alone and support that recognised how overwhelming this time can be.
That’s the context in which the Neuromuscular New Diagnosis Companion was created.
Rather than offering everything at once, it’s designed for families to process at their own pace. Helping make sense of what’s happening, what comes next and where support is available, without pressure to absorb it all straight away.
Today, MDNSW is making the New Diagnosis Companion available to families across NSW, as part of our commitment to ensuring no family feels they have to navigate the early days of diagnosis alone.
As MDNSW CEO Jessica Henry writes:
“We created the New Diagnosis Companion to be a calm, trusted starting point – a resource to help guide you through these early days… Take your time with this guide. There’s no right way to read it.”
This principle sits at the heart of the program too: you can move at your own pace and focus only on what feels most relevant right now.
What does the program involve?
The New Diagnosis Companion provides:
Early outreach once a child is diagnosed (through referral partnerships)
Personal check-in calls from a trained staff member
Tailored information and resources tailored to where a family is at in their journey
Peer support, connection mentorship from others who’ve taken a similar path
These functions are designed to help reduce isolation, build confidence, support decision-making and improve access to services.
What’s in the New Diagnosis Companion resource?
The resource includes a practical guide broken into clear chapters that families can dip into as needed. It includes:
Understanding neuromuscular conditions
Clear, essential information about your child’s condition, including where to find support and guidance.
You, your child & your family
Advice from other families, support for carers, and guidance on talking to your child, siblings and wider family and friends.
Navigating health services
An introduction to the members of your child’s care team.
NDIS & other government services
A practical snapshot of the NDIS, including how to apply, along with information about other government supports – from payments to transport schemes.
Education
Information to help guide your child through the education system, including tips and practical forms.
Social connection & recreation
Ideas for sports, activities and social programs your child could join, along with tips for finding your community.
Research & clinical trials
High-level information about clinical trials, including where to find details, who to talk to and how registries work.
Managing transitions: the road ahead
An overview of the types of transitions your child may experience in the coming years, with guidance to help you navigate them confidently.
This resource focusses on what families often need next, or most, in the early days – clarity, reassurance and a focus on what’s next.
What families told us
The New Diagnosis Companion was created alongside families and shaped by lived experience.
In response to the program, parents have said:
“What a wonderful, clear, practical support for parents and families at such a life‑changing time. Beautifully presented, covering all aspects without being too overwhelming, bringing hope and support at such a crucial time.”
Another family shared how meaningful it was to see important information brought together in one place:
“What a wonderful resource – we would have loved to have been handed this 16 years ago. It is so easy to read and so relatable. I’m sure new families will find it so useful and easy to refer back to and pass onto others.”
“The guide is comprehensive but not overwhelming, very practical and strikes just the right tone… it is like a warm hug.”
Access the resource and program
There’s no right or wrong way to take part. You can engage with as much or as little of the program as feels right for you.
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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