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The Neuromuscular

New Diagnosis Companion

Personalised support for families from the moment of diagnosis.

If your child has recently been diagnosed with a neuromuscular condition, you may not know where to start. You might never have heard of the condition before and may feel overwhelmed, worried or unsure what this means for your family’s future.

The New Diagnosis Companion provides information, connections and personalised support so you don’t have to face this journey alone. Here you’ll find the guidance you need to feel more confident and begin navigating the road ahead.

Ready to talk to someone who understands?

What does the program involve?

Personal check-in calls: Regular, compassionate check-in calls from a trained staff member.

Tailored information and resources: Easy-to-understand resources tailored to your stage in the journey.

Peer support and mentorship: Join a support group facilitated by MDNSW staff and receive informal mentorship from experienced parents who’ve taken a similar path.

You can take part in as much or as little of the program as feels right for you. There’s no expectation to engage in every part.

Resources for Families

We’ve developed a suite of easy-to-read resources to help you navigate your child’s journey. There’s no right way to read these resources. You can move through them all at once or dip into the sections that feel most relevant to you. We hope they bring clarity, comfort and direction.

Download the Full Resource Guide

Prefer to have everything in one place? You can download the complete New Diagnosis Companion Resource Guide as a single, easy-to-read PDF.

Access the Full Resource Guide

Chapter 1: Understanding Neuromuscular Conditions

Clear, essential information about your child’s condition, including where to find support and guidance.

Access Resource

Chapter 2: 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.

Access Resource

Chapter 3: Navigating Health Services

An introduction to the members of your child’s care team.

Access Resource

Chapter 4: NDIS & Other Government Support

A practical snapshot of the NDIS, including how to apply, along with information about other government supports – from payments to transport schemes.

Access Resource

Chapter 5: Education

Information to help guide your child through the education system, including tips and practical forms.

Access Resource

Chapter 6: Social Connection & Recreation

Ideas for sports, activities and social programs your child could join, along with tips for finding your community.

Access Resource

Chapter 7: Research & Clinical Trials

High-level information about clinical trials, including where to find details, who to talk to and how registries work.

Access Resource

Chapter 8: 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.

Access Resource

Types of Neuromuscular Conditions

Your child, or a child you know, may have been diagnosed with one of many neuromuscular conditions, including:

Becker Muscular Dystrophy
Congenital Muscular Dystrophy
Duchenne Muscular Dystrophy
Friedreich Ataxia
Inclusion Body Myositis
Myotonic Muscular Dystrophy (MMD)

Spinal Muscular Atrophy (SMA)
Charcot-Marie-Tooth Disease (CMT)
Congenital Myopathies
Facioscapulohumeral Muscular Dystrophy (FSHD)
Idiopathic Inflammatory Myopathies
Limb Girdle Muscular Dystrophies (LGMD)

Meet Jenny

Jenny is our Outreach Coordinator and works closely with families through the New Diagnosis Companion.

She joined MDNSW in 2011 and brings warmth, empathy and deep knowledge of the neuromuscular community. Whether she’s supporting families at camp or running our ‘Mums’ Chat’ peer group, Jenny is a trusted presence for many.

If you have a question, chances are Jenny has helped someone through it before – and she’s here for you too.

Client testimonials

“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.”

Judy

Grandparent

“The guide is comprehensive but not overwhelming, very practical and strikes just the right tone… it is also like a warm hug. ”

Bridget

Parent

“The Adventure Camp experience ended up being such a positive opportunity for John to develop independence and this was something I really wanted for him. Not only did he make new friends and enjoy new experiences like playing in the sand at the beach and abseiling, but he also developed new independent skills that he is still doing at home now like brushing his teeth every day and getting himself dressed.

He’s more confident and we both understand that things won’t fall apart if I’m not around. John can’t wait to go back to Camp next year and I am so grateful to MDNSW for making this life-changing experience for him possible.”

Effie, John’s Mum

“The Adventure Camp experience ended up being such a positive opportunity for John to develop independence and this was something I really wanted for him. Not only did he make new friends and enjoy new experiences like playing in the sand at the beach and abseiling, but he also developed new independent skills that he is still doing at home now like brushing his teeth every day and getting himself dressed.

He’s more confident and we both understand that things won’t fall apart if I’m not around. John can’t wait to go back to Camp next year and I am so grateful to MDNSW for making this life-changing experience for him possible.”

Effie, John’s Mum

“The Adventure Camp experience ended up being such a positive opportunity for John to develop independence and this was something I really wanted for him. Not only did he make new friends and enjoy new experiences like playing in the sand at the beach and abseiling, but he also developed new independent skills that he is still doing at home now like brushing his teeth every day and getting himself dressed.

He’s more confident and we both understand that things won’t fall apart if I’m not around. John can’t wait to go back to Camp next year and I am so grateful to MDNSW for making this life-changing experience for him possible.”

Effie, John’s Mum

Get Support

Call Our Team

Speak with a friendly team member for personalised guidance.

(02) 9888 5711

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Upcoming events

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Online

Mums’ Chat

A monthly virtual catch up for mothers in our community to share stories and connect in a casual environment.

Online

Online

Mums’ Chat

A monthly virtual catch up for mothers in our community to share stories and connect in a casual environment.

Online

Contact Us

Say hello & contact our friendly team today.

Email: info@mdnsw.org.au

Phone: (02) 9888 5711

Freecall: 1800 635 109

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Proud partnerships and memberships

Muscular Dystrophy NSW
ABN 11 774 587 436

Quick links

Contact

Phone: (02) 9888 5711

Freecall: 1800 635 109

Email: info@mdnsw.org.au

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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