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Welcome to your September issue of Talking Point!
This season is shaping up to be a busy one at MDNSW, with plenty of programs and events on the calendar. We’d love to celebrate the arrival of spring with you at our Spring Roll & Picnic on Saturday 27 September. It’s a chance to soak up the sunshine before enjoying a picnic lunch together. Also coming up this month is Are You New to MDNSW? on 30 September, designed to welcome families who are new to MDNSW or the neuromuscular community.
I hope everyone who joined us at NIRD at the end of August left with something valuable. I certainly learned more about just how vital medical registries are – for researchers and for tracking patterns and treatment progress. If you couldn’t make it, we’ve linked the recording and some resources.
And one last thing I’m especially excited about. You may have seen that in 2026 we’ll be taking part in a new fundraising initiative – a trek through the Larapinta. We’ll be raising funds for the next generation of kids heading to Adventure Camp.
I look forward to us continuing to come together through community events that bring us closer to one another.
Yours sincerely,
Jess Henry
Jess Henry
CEO, MDNSW
Spring Roll & Picnic
Grab your family, friends and carers and join us on Saturday 27 September, 12–3pm at Eric Primrose Reserve, Rydalmere, for a fun-filled Spring Roll along the Parramatta Cycleway! Glide by the river, soak up the sunshine and then refuel with a tasty catered picnic lunch (BBQ, picnic treats and drinks included) plus plenty of games and activities.
RSVP now with your numbers and dietary needs and get ready to roll into Spring!
Are You New to MDNSW?
We’re launching a brand new way for people living with a neuromuscular condition and their support networks to get connected! Join us Tuesday 30 September, 7–8:30pm online to discover all the ways MDNSW can support you. From Peer Connect groups to inclusive camps and retreats, we’ll help you find connection, support and a sense of belonging.
Come meet the team, ask questions and find your place in our community.
Key Takeaways: NIRD 2025
This year’s Neuromuscular Information and Research Day (NIRD) was packed with powerful insights, personal stories and practical takeaways for living well with a neuromuscular condition.
The day was all about sharing strategies that make a difference, from open communication and creative problem-solving, to safe spaces for connection.
Our Lived Experience panel reminded us that no two journeys are the same, and that advocating for yourself and asking for help can be life changing. We picked up expert advice on safe, sustainable exercise and muscle care, and learned about the importance of high-quality research in supporting new treatments and trials.
Missed the event? You can watch the full recording, read the highlights and download resources from a lived experience expert.
Family at the Heart of Care
As we look back on World Duchenne Awareness Day on 7 September, we’re reflecting on the incredible role families play in the lives of people living with Duchenne and Becker muscular dystrophy.
Behind every person living with Duchenne is a circle of love – parents advocating fiercely, siblings supporting in countless ways, grandparents, friends and communities providing strength at every turn.
Here are some words of wisdom from our community:
“Muscular Dystrophy presents its fair share of daily challenges, but it also brings some positive aspects. My parents have instilled in me the importance of perseverance and a positive mindset. They’ve taught me not to give up, and that with the right attitude, I can overcome many obstacles. Their unwavering support has been crucial in shaping my approach to life, allowing me to navigate it as effectively as possible.”
Their stories remind us that care is more than a role – it’s a shared journey full of love, resilience and triumph.
Q&A with MDNSW CEO, Jess
This month in our staff spotlight, we’re featuring none other than MDNSW CEO, Jess! We asked her a few questions we thought you’d love to hear the answers to. Here’s a little snapshot of her Q&A.
Q: What do you think makes MDNSW such a special community to be part of?
A: People "get" each other and are always willing to jump in to share their experiences and support others. A small but very mighty community!
Q: If you had to describe our community in three words, what would they be?
A: Passionate, connected and generous
Q: What’s the best part of your workday? What keeps you motivated?
A: We hold a monthly All-Staff meeting during which we review past and upcoming activities, and check-in on our progress as a team. We always include a "Mission Moment" at the end of the meeting in which we highlight something fabulous we've heard about or seen within our community.
Support the Larapinta Trek for a Life-Changing Cause
We are excited to announce our new fundraising challenge: Larapinta Trek 2026!
However you participate, we’d appreciate your support to help us raise funds for the next generation of young people living with a neuromuscular condition to experience the magic of an MDNSW Adventure Camp.
This Larapinta Trek involves hiking across varied terrain over several days and camping under the stars.
While we understand this challenge isn't accessible for everyone in our community, and that may be disappointing, there are still plenty of ways to get involved! You can spread the word, make a donation or choose your own fundraising mission.
For a limited time, we are also offering an exclusive Early Bird discount of $150 off your registration fee until 30 September.
Remember you can view all the upcoming events and opportunities for the remainder of the year in our Peer Connect Calendar here.
Register for all our events by emailing info@mdnsw.org.au or calling (02) 9888 5711.
LGMD Connect with Daniel Ferguson
WHEN: Tues 7 October, 7–8pm
WHERE: Online
Ever wondered what it’s like to tackle tricky travel plans while living with LGMD or other neuromuscular conditions?
At LGMD Connect in October, Daniel will share:
- Highlights from his recent trip to the 2025 International LGMD Conference
- His Disney World adventures
- Insights on connecting with peers across the globe
- Practical tips for navigating airports and plane travel
- Life and travel with LGMD
Don’t forget our Show & Tell – bring your own travel stories and questions!
Student Life
WHEN: Wed 22 October, 12 – 1:30 pm
WHERE: WSU Parramatta Campus (Rydalmere)
Launched earlier this year, the group was created especially for students to meet others who understand, swap experiences and feel connected. Whether you’re after advice, friendship, or simply a place to belong, this is your chance to be part of something special.
Women’s Retreat – 3 Spots Left
WHEN: Fri 31 October – Sun 2 November
WHERE: Rydges Newcastle
There are only 3 spots left to escape, unwind and connect at our upcoming Women’s Retreat!
Enjoy a three-course welcome dinner, luxury accommodation at Rydges, and time to explore Newcastle’s vibrant cafes, galleries and beaches. It’s the perfect weekend to rest, recharge and share stories with women on similar journeys.
Only 3 spots left – 2 for non-accessible rooms and 1 for an accessible room.
Hunter Lunch
WHEN: Sat 1 November, 12 – 2:30 pm
WHERE: Newcastle CBD, Venue to be advised
Join us for a relaxed, catered lunch for our central coast and Newcastle community and families.
It’s a chance to meet locals, share stories and spark connections that last. From fresh local produce to sweet treats and great coffee, there’ll be something to satisfy every taste.
RSVP by 16 October and let us know any dietary requirements.
Summer Camp
WHEN: Sun 11 – Fri 16 January 2026
WHERE: Sydney Academy of Sport and Recreation
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 who use powerchairs for mobility. Expect pool dips, board games and powerchair football – there’s something for every age, personality and ability.
Our camps and retreats are highly popular, so don’t miss your chance. Register today!
Summer Camp Open Day
WHEN: Wed 14 Jan 2026, 10am – 2pm
WHERE: Sydney Academy of Sport and Recreation
Join us to discover Summer Camp’s inclusive, fun-filled activities that support connection, independence and everyone’s unique abilities.
- Chat with our team and connect with campers
- Discover the Camp experience and join fun activities!
- Build your confidence to attend a Summer Camp, new adventures await!
Have Your Say: Join the NDIA Participant Reference Group
The NDIA is seeking new members for its Participant Reference Group (PRG) for 2026–27.
The PRG ensures the NDIA hears and understands the real experiences of the disability community to help improve the NDIS. It would be fantastic to have someone from the MDNSW community involved – sharing feedback on policies and systems, shaping how services are delivered, and making sure the voices of people with neuromuscular conditions are heard.
This opportunity is open to NDIS participants, plan nominees, carers, child representatives and family members. Meetings are held both online and in person, and members are paid for their time.
Click here for more information or to register your interest →
NDIS Self-Management Made Simple with PDCN
Thinking about self-managing your NDIS plan, or already doing it and want more tips? PDCN’s NDIS workshop series this October will cover everything from using budgets and making payment requests, to keeping records and accessing resources. You’ll also build the skills and knowledge to make confident, ethical decisions about using your NDIS funding.
Thanks to our Official Partners
