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Welcome to your June 2026 issue of Talking Point!
As the first half of the year draws to a close, it’s a great moment to reflect on what we’ve achieved together so far – especially the incredible result of this year’s Big Red Roll + Stroll. Raising $115,000 is a huge achievement, and a wonderful reflection of what this community can do when we come together with generosity and purpose.
This month also highlights something we continue to see across our programs – the value of learning from one another. Our InfoShares continue to show how lived experience can become practical, trusted guidance. I encourage you to join our next one – Cost of Living with a Disability – and see that impact for yourself.
The importance of connection closer to home is also front and centre through our growing Peer Connect Local meetups. Our regional gatherings have created spaces for people to build support networks without needing to travel far.
There are plenty of ways to get involved this month, whether it’s joining an InfoShare, exploring our resources or supporting our programs before the EOFY. Every action helps strengthen our community.
Yours sincerely,
Jess Henry
CEO, MDNSW
Register for any event upcoming event via our online form →
Maker's Day
WHEN: Friday 19 June, 11am – 3pm
WHERE: PHIVE Parramatta
Join us for a cosy 'Springtime in Winter' tea party with crafts this Maker’s Day!
Settle in for a relaxed, creative afternoon of decorating cards, creating wildflower bouquets and choosing your own scents and botanicals in a DIY candle‑making workshop. No experience needed – just bring your imagination!
Lunch, drinks and materials provided.
Student Life
WHEN: Wednesday 24 June, 12 – 2pm
WHERE: Macquarie University
The Student Life group is a supportive space to meet others who understand, swap experiences and feel truly connected.
Whether you’re looking for advice, friendship, a study buddy or just a place to hang out, this is your chance to find your people in your student years!
InfoShare: Cost of Living with a Disability
WHEN: Tuesday 30 June, 7 – 8:30pm
WHERE: Online
The rising cost of living can hit harder when you’re juggling disability‑related expenses. You don’t have to figure it out alone.
Join this InfoShare to hear people with lived experience share practical ideas for managing everyday costs, from home modifications to medical expenses.
You’ll also hear about concessions and supports that may help. Expect to leave with useful resources and clear next steps to help you understand what you may be eligible for.
Mums' Chat
WHEN: Monthly
WHERE: Online
Motherhood can ask a lot, and when you’re raising or looking after a child with a neuromuscular condition, it can feel even heavier.
Mum's Chat is a relaxed, supportive space for mothers in our community to take a breath and connect with others who understand.
Share stories, swap tips, listen or simply be; however you need to show up. New faces are always welcome.
July–December dates coming soon...
NEW Peer Connect Calendar coming soon...
New Diagnosis Companion
Start with Understanding and Support
Starting to navigate a new neuromuscular diagnosis for a child in your life can be overwhelming, which is why Chapter 1: Understanding Neuromuscular Conditions is all about helping you find your footing.
Inside, you’ll find:
- Introduction to the program
- Factsheets about a range of neuromuscular conditions
- First steps after diagnosis… and more
Take a moment to explore Chapter 1 and see what feels most helpful for you.
Save The Date: Neuromuscular Information and Research Day (NIRD) 2026
Curious about the latest in neuromuscular research, treatments and support? NIRD is your chance to ask questions and hear directly from experts, families, carers and community members who understand the journey.
This free, accessible online event brings our whole community together to share practical insights, lived experience and the latest updates.
WHEN: Saturday 29 Aug, 1 – 4:30pm
WHERE: Online
Save the date – more details coming soon!
Help more Young Adults like Jaxon and Sam find their people
For young people living with neuromuscular conditions, adulthood can mean losing the support systems that they've always relied on, just as life becomes more complex.
As childhood services and routines start to fall away, many begin to feel isolated.
Young Adults’ Retreat exists for this moment.
It's a place where people like Jaxon and Sam find connection, confidence and a sense of belonging – often for the first time in adulthood.
With EOFY approaching, you can help ensure no young person has to navigate this transition alone.
Will you give today to help someone find their people?
Peer Connect – Regional Roundup
Over the past few months, Peer Connect Local lunches have brought our regional community together from Wollongong to Dubbo and Newcastle.
Connecting locally is a lifeline, especially when living regionally can come with added challenges.
Families valued the chance to meet others, share experiences and swap tips on local services, transport and the NDIS.
“It was a wonderful opportunity to connect with others in my area” shared one attendee. Another added, “It was fantastic not having to travel to the city to be able to connect with others with MD!”
As we look ahead, we’re excited to keep building these local connections and helping more people find support and belonging close to home.
Finding Your People: Highlights from Young Adults’ Retreat
Our May Young Adults' Retreat was an unforgettable weekend filled with long picnics, music, laughter and the comfort of being side-by-side with friends. Late nights turned into early mornings sharing pizza, clinking glasses and having conversations with people who just get it.
It was a space where everyone could move at their own pace – to join in, pause, stay up late or rest without pressure.
At its heart, Retreat was about being among friends on a similar path, without needing to explain yourself.
As one participant said, “Normally when I’m with a group of people, I feel different because I have medical condition...But here I’m not the girl who’s different. I’m the same as everyone else."
That's what Young Adult's Retreat is all about – connection, belonging and the freedom to just be.
Top Tips and Travel Experiences from our Community
Our recent Accessible Travel InfoShare highlighted just how valuable lived experience can be, with community members sharing practical, real-world tips you won't find online.
Led by Carolyn, the session explored the Seven A’s of Accessible Travel framework – from advanced planning and airlines to activities and assistance – with the group contributing their own insights along the way.
As one attendee shared, “It was really nice to connect with people who have faced similar challenges while travelling.”
A HUGE Community Effort at Big Red Roll + Stroll 2026
We’re still buzzing from the incredible generosity and community spirit at this year’s Big Red Roll + Stroll. From the energy at Sydney Zoo to the way everyone showed up for each other, it was something really special.
And the result? Together you raised $115,000.
Every dollar will help more children living with neuromuscular conditions to experience the joy, independence and connection of programs like Summer Camp.
From all of us at MDNSW, thank you. Whether you rolled, strolled, fundraised or cheered from the sidelines, you made this happen.
Meet Jenny – Outreach Coordinator at MDNSW
Jenny is our Outreach Coordinator, although you might know her by another name – Camp Fairy.
If you’ve ever been in contact with us, you’ve probably spoken to Jenny. She joined MDNSW in 2011 and has over 27 camps under her belt!
"Showing value and respect to others is a big part of me." she says. "There's a quote by Mother Teresa which I love - 'We cannot all do great things, but we can do small things with great love.'"
Day-to-day, Jenny is responsible for managing enquiries, supporting Camps and Retreats, and providing personalised support, mentorship and check-ins for families navigating a neuromuscular diagnosis.
If you have a question, chances are Jenny has helped someone through it before!
Free PDCN Workshops June
In June, the Physical Disability Council of NSW (PDCN) is offering free online and in-person workshops.
Topics include:
- Practical self-care tools for parents of children living with disability
- Methods to help you know when and how to speak up for yourself or more formally advocate for yourself
- NDIS legislation changes
- What does trauma look like, and practical tools for growth after negative experiences
What does the Federal Budget mean for Children and Young People with Disability?
Many in our community will have seen the Australian Government’s 2026–27 Federal Budget, handed down on Tuesday 12 May.
The Budget includes significant changes that affect the disability sector, including cuts to the NDIS and disability education supports.
Understanding what these measures mean in practice isn’t always straightforward.
To help, Children and Young People with Disability Australia (CYDA) has developed a Federal Budget Explainer outlining the key measures and how they may impact you.
FREE Family Magic Show
WHEN: Sunday 12 July
WHERE: Wentworthville Leagues Club (50 Smith St, Wentworthville
Mark your calendars! Retina Australia and Magic Mania would like to invite you to their mid-year magic show at Wentworth Leagues Club on Sunday 12 July.
The show is free for any person with disability and their families and carers. There will be three shows; 10:30am, 12pm and 1:30pm.
If you’d like to join the fun, send us an email us and we’ll help you secure your seats!
RSVP by Friday 10 July so we can organise your tickets.
Thanks to our Official Partners
