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Welcome to your November issue of Talking Point!
While the year is starting to wrap up, there’s still plenty to celebrate in our community.
The countdown is on for Community Day! Wednesday 19 November is your last chance to RSVP and join us for a festive day of games, activities and connection for everyone. It’ll be a vibrant, rewarding way to wrap up a big year with those who’ve been beside us.
Summer Camp 2026 is coming up early in the new year. It offers a safe, inclusive space where children with neuromuscular conditions can make friends, try new activities and grow in confidence. We know how important it is to feel comfortable before attending, so we’re hosting an Open Day on January 14. Come and meet our team, explore the activities and see firsthand what makes camp so special.
In fact, one of our regular camp carers, Blake, shares why he’s taking on the 2026 Larapinta Adventure to support kids with neuromuscular conditions and keep our life-changing programs running.
In this issue, we also bring you an important NDIS update on Short Term Respite. Read on to see what’s changed and what we’re doing about it.
We can’t wait to celebrate another incredible year with you soon!
Yours sincerely,
Jess Henry
CEO, MDNSW
LAST CHANCE to RSVP for Community Day!
The countdown is on. Community Day is fast approaching!
In just 10 days the music starts, the pizza oven fires up and the MDNSW community gathers together to celebrate another incredible year.
This year’s line-up is looking fresh and festive, featuring:
- Laid-back general knowledge trivia with prizes up for grabs
- A scavenger hunt adventure for all ages
- A festive family photobooth with a pro photographer and an immersive setup you’ll love!
There are also three amazing experiences you could win just by attending. Time is ticking, the tree is trimmed and we’ve got a Santa stocking FULL of presents!
All we need now is you.
Today is the last day to RSVP!
WHEN: Saturday 29 November
11:00am – 2:00pm
WHERE: The Granville Centre
2a Memorial Dr, Granville NSW 2142
Make this summer one full of unforgettable experiences, independence and friendship. Summer Camp is designed for kids aged 6–18 living with neuromuscular conditions who use powerchairs, offering inclusive activities tailored to every personality and ability.
Campers are grouped by age and supported by carers, giving you peace of mind while your child enjoys new adventures.
As one parent shared: “They come home beaming with enthusiasm. Children with MD are restricted in comparison to their peers and being able to attend just one camp per year is invaluable to their wellbeing.”
This transformative experience helps children push past comfort zones, discover their strengths and believe in what they can achieve.
NDIS Short Term Respite Update
We’re aware of the recent NDIS changes to short term respite (STR), previously known as short term accommodation (STA). We understand these changes may affect some members of our community and how you access our services.
We want to reassure you that we remain committed to exploring every available option to help you continue accessing our services, though we know this may look different for each person depending on their circumstances. In the new year, we’ll be consulting with our community to better understand how these changes affect you and to consider any actions we may need to take.
Moving Forward for MDNSW – Blake’s Larapinta Adventure
You might recognise this friendly face. It’s Blake Grueter, a regular volunteer carer at MDNSW camps and retreats.
In 2026, Blake’s taking on a new kind of adventure. He’ll be trekking the Larapinta Trail to help keep these life-changing programs running.
“I signed up to raise money for MDNSW and support a community that means so much to me,” Blake says. “These programs are so important, not only for participants, but also for their families.”
A newly graduated Occupational Therapist, Blake first joined MDNSW as a student volunteer. Since then, he’s become a much-loved part of the community. “I have continued to volunteer with MDNSW because of the amazing community, the incredible staff, dedicated volunteers, and most importantly, the participants.”
As he prepares to trek through the stunning red centre, Blake is most excited about connecting with others who share his passion for making a difference. “There’s something so special about being part of a group all walking for the same cause,” he says.
And his advice to others thinking of signing up? “In the words of a famous sporting brand, JUST DO IT!”
A Magical Women’s Retreat in Newcastle
Our 4th annual Women’s Retreat brought 17 wonderful women together for a weekend adventure!
We kicked things off with a Halloween-themed welcome party before exploring the city’s treasures – from markets to an exhibition. A wander along the waterfront led us straight into a lively Country Music Festival, where cowboy hats were the unofficial dress code!
Saturday night turned into a Country sing-along, with everyone channelling their inner Dolly Parton for karaoke after dinner. The weekend wrapped up with reflections on courage, connection and the joy of shared experiences.
While in town, we also hosted a Peer Connect lunch at Rydges. Our Hunter community caught up with friends, chattered about inclusive sports and swapped insights about services in the area over a lively lunch.
“This is the best getaway I’ve been to! It’s such a relief to just turn up and have fun. Thank you MDNSW!”
“Interacting with other women empowered me and inspired me to be braver, even in the rain!”
Another heart-warming retreat brimming with camaraderie, courage and plenty of laughs – until next year!
Golden Eagle 2025: $50,000 Donated to Muscular Dystrophy NSW
The Golden Eagle is an annual horse race that links each competing horse with a charity, donating 10% of the prize money to support important causes. $1 million was shared among charities focused on hospitals, cancer research, mental health programs and community services.
This year, Muscular Dystrophy NSW was selected as one of the beneficiaries. We were paired with Depth of Character, who finished fourth. This resulted in a $50,000 donation to help fund our vital programs.
Our Relationships Manager, Pat, and Board Member, Tait, were at the event to speak about how generous contributions like this help us deliver stronger support and opportunities for the neuromuscular community.
You've gotten this far!
Why haven't you RSVP'd for Community Day yet?
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.
MD Dads Bowling Night
WHEN: Sun November 30 12 – 2pm
WHERE: Strike Bowling, Macquarie Shopping Centre, North Ryde
Join other dads of kids living with neuromuscular conditions for a relaxed bowling afternoon.
Meet mates, swap stories and enjoy a bit of friendly rivalry. Lunch and activities are all covered!
To RSVP for this event, contact Chris at 0423 386 977
Peers Party
WHEN: Thurs 4 December 12 – 1:30pm
WHERE: Online via Zoom
Join us online for our end of year Peers Party! You’ll enjoy a festive mix of activities, including trivia and bingo, reflections on the year and the opportunity to share ideas for the year ahead. Join us to close 2025 with laughter, connection and community spirit.
We’ll be gifting all attendees a $25 voucher for lunch. RSVP by Tuesday 2 December.
Summer Camp and Open Day
WHEN: Mon 12 - Fri 16 January 2026
OPEN DAY: Wed 14 January, 10am – 2pm
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.
Curious about Summer Camp or have questions? Join us on 14 January for Open Day to explore the Camp experience, enjoy fun activities, meet our team and connect with campers!
Young Adults' Retreat 2026
WHEN: Fri 6 Mar – Mon 9 Mar 2026
WHERE: Point Wolstoncroft Sport and Recreation Centre
If you’re 18-30 living with a neuromuscular condition, our Young Adults Retreat is your gateway to building a supportive community for life!
This retreat is all about independence, fun and connection.
You’ll build life skills, build friendships and enjoy the freedom to shape your own experiences in a supportive and inclusive environment.
Adventure Camp 2026
WHEN: Mon 13 – Fri 17 April 2026
WHERE: The Tops Conference Centre, Stanwell Tops
Discover adventure, friendship and unforgettable memories at our accessible Adventure Camp!
For kids and teens aged 6-18 living with a neuromuscular condition, this camp is all about building confidence, trying new things and making friends in a fun and supportive environment.
Expect 5 action-packed days of archery, abseiling, movie nights and more – adventures for every personality!
Connect with Other Carers Through the Carer Gateway Community Forum
Are you caring for a loved one, friend or family member? You don’t have to do it alone. The Carer Gateway Community Forum is an independent online space where carers can connect, share experiences and access helpful resources.
It’s completely anonymous, welcoming and designed to help you build a network of genuine peer support.
Here, you can:
- Connect with other carers who truly understand
- Find trusted advice, information and educational resources
- Ask questions, share tips and learn from lived experience
- Navigate challenges in a safe, understanding community
Dreamnight at Taronga Zoo
WHEN: Thurs 4 December, 5:30pm
WHERE: Taronga Zoo, Bradleys Head Rd, Mosman
Enjoy a FREE magical evening exploring Taronga Zoo after hours, surrounded by the sights and sounds of your favourite animals under the stars. This year’s event features special activities, experiences and guest appearances beyond Taronga’s usual offerings. There are only 50 FREE passes available to the exclusive Dreamnight, so register below to secure yours!
Can’t make it on 4 December? No problem, tickets are valid until 31 December 2026.
Unlock your Potential with Free PDCN Workshops this December
This December, the Physical Disability Council of NSW (PDCN) is offering free workshops to help you:
- Expand your knowledge and skills
- Build self-awareness
- Boost confidence
- Understand your rights and available supports
It’s the perfect time to invest in yourself and move into the new year empowered!
Learn from leaders with lived experience, connect with others and access follow-up support to keep your growth going.
Thanks to our Official Partners
