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Welcome to your May 2026 issue of Talking Point!
Welcome to the action-packed month of May!
As we take a moment to reflect on the month we’ve had, Adventure Camp was undoubtedly one of the highlights. No matter how many times I see it, it’s always powerful to witness young people getting outside their comfort zones, trying something new and connecting with others.
There’s also momentum building as we head into the Big Red Roll + Stroll this weekend. Whether you’re rolling, strolling, fundraising or cheering others on, I encourage you to get involved.
And with our Community Survey closing soon, now is the time to share your voice. Your feedback helps shape how we support and advocate for our community into the future.
This month also brings important updates. We’re proud to have launched the New Diagnosis Companion, providing families with clear, compassionate support from the very beginning. At the same time, recent NDIS changes may bring uncertainty for many. We want you to know we are here and your experiences matters – please share them with us so we can continue to advocate alongside you.
And finally, we celebrate some incredible sporting achievements within our community, showcasing the talent, determination and team spirit that continue to energise us all.
Yours sincerely,
Jess Henry
CEO, MDNSW
Register for any event upcoming event via our new online form →
InfoShare: Accessible Travel
WHEN: Tuesday 26 May, 7 – 9pm
WHERE: Online
Join our online information session on accessible travel, where we’ll cover essential topics to help you plan with confidence.
Learn about:
- Accessible flights, cruising and more
- Booking inclusive accommodation
- Portable equipment & health management
- Travelling with support workers
- Choosing the right travel insurance
- Communicating your needs clearly
Learn valuable tips and recommendations from people with lived experience!
MD Women’s Network
WHEN: Wednesday 3 June, 7 – 8:30pm
WHERE: Online
The MD Women’s Network is back for our next session.
Join women from across NSW to connect, share experiences and explore the topics that matter most to you – like navigating the NDIS, women’s health and relationships.
It’s a welcoming, inclusive space shaped by the women in it.
Peer Connect Local: Hunter Meet Up
WHEN: Saturday 13 June, 12–3pm
WHERE: Rydges Newcastle
If you live on the Central Coast or in the Hunter Region, Peer Connect is coming for you!
Spend the afternoon with others in your local community who understand what it’s like to live with a neuromuscular condition. Have a chat, share local tips and build meaningful connections close to home.
It’s relaxed, welcoming and lunch is on us!
Maker's Day
WHEN: Friday 19 June, 11am – 3pm
WHERE: PHIVE Parramatta
Maker’s Day is a chance to come together, share passions and get hands-on with creative workshops led by peers in the neuromuscular community. Whether you’re into painting, crafting or just soaking up the inspiration, this free, accessible event is all about connection and creativity. No experience needed – just bring your imagination!
Lunch 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 from Service NSW 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' Retreat
WHEN: Friday 26 – Sunday 28 June 2026
WHERE: Federation Gardens & Possum Hideaway, Blackheath
A special weekend just for mums to step away from everyday responsibilities and reconnect with others who understand.
Whether you choose to sit by the fire, go for a walk, enjoy a coffee outing or simply rest, this retreat is about taking time for yourself – without pressure, expectations or schedules.
This year’s retreat also includes a PDCN ‘Nurturing Self’ workshop.
Summer Camp
WHEN: Friday 18 – Tuesday 22 December
WHERE: Sydney Academy of Sport and Recreation, Narrabeen
An inclusive, supportive space to build confidence, make friends and have fun!
Summer Camp is for kids aged 6-18 living with a neuromuscular condition.
Expect pool dips, board games and powerchair football – there’s something for every age, personality and ability. Adventure awaits!
New Diagnosis Companion
Your Guide for the Journey Ahead
Last week, we launched something special for families new to the neuromuscular community. The New Diagnosis Companion is a new program designed to make the first moments after a diagnosis a little less overwhelming and a lot more supported.
It provides clear and compassionate support, information and resources, and connection to people who understand.
Families from our community who’ve read the resources said:
“The guide is comprehensive but not overwhelming, very practical and strikes just the right tone… it is like a warm hug.”
If you or someone you know is navigating a new diagnosis, or you’d like more information on where to get support, we invite you to check out the full story and explore the program on our website.
Closing Tomorrow: 2026 Community Survey
This is a final reminder to share your voice in our 2026 MDNSW Community Survey. The survey closes tomorrow and we’d really value hearing from you before it wraps up.
If you’re living with a neuromuscular condition, or you’re a family member, carer or supporter who engages with MDNSW, your perspective helps guide how we shape our services, programs and advocacy across NSW.
The survey takes around 8 minutes to complete.
As a thank you, everyone who completes the survey will receive a $25 VISA Gift Card, sent digitally after the survey closes.
When you open the survey, you’ll be asked to enter a password. Please use: MDNSW2026
Keep fundraising for your chance to win!
The Big Red Roll + Stroll is just around the corner – on May 16! There's still time to rally your supporters and helps us reach out goal for kids living with neuromuscular conditions.
But the excitement doesn’t end on event day.
Keep fundraising right up until 31 May and you’ll go in the draw to win one of five fantastic raffle prizes – all unique experiences you won’t want to miss!
How to get involved:
- Share your fundraising page and updates with your community.
- Keep raising funds until 31 May for your chance to win.
Thank you for being part of the MDNSW community and helping us give more kids a life-changing week of confidence, independence and friendship at Summer Camp.
Connecting Across the Cosmos
Over a weekend by the harbour, our community came together for the 2026 Peer Connect Retreat.
We shared long breakfasts, late‑night chats and group adventures around the city – from the Chinese Gardens to the Fish Markets and SEA LIFE Aquarium. The evenings brought a chance to dress up and head out, with groups enjoying Anastasia the Musical or gathering over an Italian feast.
There was time to explore, rest and laugh, alongside space to talk openly about life with neuromuscular conditions.
This year’s theme, Connecting across the Cosmos, came to life beautifully, with people from different places and experiences finding their place in the same orbit.
One peer said: “It was great to be a tourist in my own city, going places I have not been before and so much better with a group of great friends who were there to help and support all the way along.”
Action, Adventure, Fairytales and Friendships
Five unforgettable days were spent together at Adventure Camp in April, as we welcomed familiar faces and many new friends to our adventures at Stanwell Tops.
Each day brought its own adventure – from archery, abseiling and bottle rockets to movie nights, card games and more.
It was wonderful to watch the campers’ confidence build each day as they laughed with friends, teamed up for challenges and encouraged one another to try new things.
Sure, the brightest purple shirts we’ve ever seen did half the work of bringing us closer together (they were so bright we practically formed our own constellation just to get a group picture in them!), but so did every shared meal, late-night chat and group challenge.
We left with full hearts, new skills and friendships that will carry us through the year.
Meet Milvia – Quality and Operations Manager at MDNSW
Milvia describes herself as a technology and policy nerd. And if you ask the team, she’s also our go‑to for all things process, systems and “how can we make this work better?”
She keeps MDNSW running as smoothly as possible behind-the-scenes, from improving our processes and the way we work as a team, to keeping our reporting and records up to date.
And she always does it with a smile – “that’s my job and I actually like it!” she says.
One of the best parts about doing this work?
“Knowing that my work helps keep our programs safe, and in turn, enjoyable for everyone,” Milvia says.
Milvia’s work is fundamental to everything we do. She helps create the strong, reliable foundations that allow us to provide programs and services to our community.
Free PDCN Workshops May
In May, the Physical Disability Council of NSW (PDCN) is offering free online and in-person workshops.
Topics include:
- NDIS legislation changes
- Nurturing yourself and enhancing your wellbeing
- Self-advocating for employment opportunities
- What does trauma look like, and practical tools for growth after negative experiences
NDIS Changes: How you can help us advocate
As many in our community will know, the Minister for Health, Disability and Ageing announced major changes to the NDIS in April. Some details are clear, though many remain uncertain, as outlined in this helpful overview by People with Disability Australia.
We know announcements like this can cause worry and distress. We want you to know that we will continue to advocate strongly for the needs of our neuromuscular community.
To do this well, we need to understand what’s happening for you. If you’re currently navigating challenges with the NDIS, we invite you to take part in our Community Survey. It includes questions about how recent NDIS changes are affecting you. Your responses will inform our advocacy with policymakers and other disability organisations.
You’re also welcome to contact us anytime to share your experiences.
Golden moment on the world stage for Australian boccia
The Aussie Boccia team is celebrating Jamieson Leeson and Dan Michel taking home gold in the BC3 pairs event at the Montreal World Cup in April.
The duo delivered a winning performance at the tournament with a 5–2 victory in the final against Japan.
Their success shows the strength of their partnership. While they often compete against each other on home soil, they came together as a cohesive, supportive team.
A huge congratulations to Jamieson, Dan and their ramp operators on this outstanding display of skill, sports and camaraderie!
From the field to the page: A championship win, told by Jaxon Taylor
Last month, several members of our community took to the national stage at the Australian Powerchair Football Association (APFA) Club Championship
Among a fiercely competitive field, the Western Sydney Wanderers claimed their place as national champions in a dominant, unbeaten run.
A standout moment saw Joshua Ryan, representing Sydney FC Foundation Powerchair Team, named Most Valuable Player.
Written by our community member and Marketing Intern, Jaxon Taylor, this story captures the pride and spirit that define powerchair football.
Thanks to our Official Partners
