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Welcome to your first issue of Talking Point 2026 – February!
Welcome back. I hope you had a restful break and a positive start to the new year.
We’ve certainly hit the ground running at MDNSW. This edition of Talking Point reflects the energy, connection and momentum already building across our community.
Our first camp of 2026, Summer Camp in Narrabeen, was truly one of the most fulfilling, joyful and prank-packed camps we’ve had. I’m excited to share some highlights with you below.
If you haven’t yet checked out the Peer Connect calendar for the first half of 2026, take a look here. It’s a busy year ahead with many opportunities to connect with people near you, celebrate together and enjoy shared experiences.
I’d also like to give a warm welcome to everyone who has joined us since December.
If you’re new to MDNSW or to life with a neuromuscular condition, our new Tip Sheets are a great place to start. This series shares practical advice and helpful tips to empower your journey and make everyday life a little easier. Check them out below.
It’s shaping up to be an action-packed year with plenty of chances to connect, celebrate, fundraise, relax, ask questions, and share stories. I’m excited to be alongside you.
Yours sincerely,
Jess Henry
CEO, MDNSW
A Summer Camp to Remember
We had a bright and busy week at Summer Camp this January, as we welcomed returning and new faces to camp in Narrabeen. There were activities for everyone – from artists to athletes and all personalities in between.
On days one and two we amped up the energy with laser tag, science experiments, a reptile show, pool dips, water fights, and even drone flying. We also enjoyed quieter moments of crafts, games and a visit from Paws Pet therapy.
Paralympians Jamieson and Daniel visited to help campers fine-tune their Boccia skills – and even let them hold one of their silver medals from Paris 2024! The week wrapped up with face painting and disco dancing at a Heroes vs Villains party.
Summer Camp 2026 ended with full hearts, strong friendships and memories that’ll last well beyond camp.
One parent summed it up perfectly:
“Finn enjoyed himself so much that he didn’t want to come home. As parents, it gives us so much comfort knowing that when Finn is with the MDNSW team, we never have anything to worry about.”
We can’t wait to do it all again this December!
A Heartwarming Start to Peer Connect 2026
Our first Peer Connect event for 2026 began with warmth and laughter at the Love Your Peers Connection lunch on 14 February. Sixteen participants gathered at Club Parramatta for coffee, cupcakes and lively conversation over lunch. We celebrated our community by sharing little gifts – including mugs, socks, teddy bears and other feel-good gifts – to show our appreciation. By the afternoon’s end, everyone had shared, listened, and connected. A beautiful reminder of the power of coming together with people who truly understand.
We’ve got a tip for that
Information and tips to empower your journey living with a neuromuscular condition.
Ever had a moment where you've thought, “I wish there was a guide for this?” Good news – now there is!
We’ve launched a new series of tip sheets to make navigating life with a neuromuscular condition a little clearer and a lot more supported.
Our first two tip sheets are about:
- Starting your journey with MDNSW and a new diagnosis
- Practical supports for living with a neuromuscular condition
Created with input from experts, MDNSW staff and community members, these resources are practical and shaped by lived experience.
InfoShare: Employability Edge
WHEN: Tuesday 24 February, 1:30 – 4pm
WHERE: Online
Looking to start or return to work? Curious about disability inclusion and accessibility in recruitment or the workplace?
Join our Employability Edge interactive workshop with the Physical Disability Council of NSW (PDCN), designed by and for people with disability. Learn practical tools to boost confidence, navigate job applications, request adjustments, and secure meaningful employment — all with guidance from facilitators with lived experience.
FSHD Friends
WHEN: Tuesday 3 March, 7 – 8:30pm
WHERE: Online
FSHD Friends is a supportive online space where people with FSHD connect, share stories, swap tips and feel understood. If you’ve ever felt isolated living with a rare neuromuscular condition, this is your place.
Emma Weatherly, CEO of FSHD Global and a proud member of the FSHD community, will join us to share her lived experience and talk about disability inclusion.
International Women’s Day
WHEN: Friday 6 March, 11:30am – 2pm
WHERE: Cabarita Conservatory
Celebrate International Women’s Day with other women, families and carers from our neuromuscular community. Join us for a riverside luncheon celebrating the strength, remarkable resilience and voices of women in our community.
InfoShare: Tips for Finding and Keeping Good Support Workers
WHEN: Wed 25 March, 12 – 1:30pm
WHERE: Online
Finding and keeping the right support workers can make a big difference. In this session, you’ll pick up practical tips on clearly defining your needs, finding someone who’s the right fit for you, and building a positive working relationship that lasts.
Peer Connect Local: Illawarra and Central West Meet Ups
If you live in Central West NSW or the Illawarra region, Peer Connect is coming to you!
Spend the afternoon with peers in your community who understand what it’s like to live with a neuromuscular condition. Have a chat, share local tips and build meaningful connections in your own community. Lunch is on us!
Central West Meet Up
Sunday 19 April, 12–3pm at Orange Ex-Services’ Club
Illawarra Meet Up
Wednesday 15 April, 12–3pm in Wollongong
Adventure Camp 2026
WHEN: Monday 13 – Friday 17 April
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!
Young Adults Retreat May 2026
WHEN: Friday 29 May – Monday 1 June
WHERE: Sydney Academy of Sport and Recreation, Narrabeen
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 building friendships, practicing independent living and making memories with the freedom to plan your own program.
This getaway is fully funded, so there is no need to use your NDIS funds.
Save the date for a Sunday Soirée
Join us on Sunday 22 March 2026 at the Australian National Maritime Museum for a Sunday Soirée featuring drinks, canapés and stories from the community.
You'll learn about the moments of friendship, laughter and confidence that your support helps create. Plus, you’ll have the chance to take part in live giving opportunities that create immediate impact.
WHEN: Sunday 22 March, 2 – 4:30pm
WHERE: Australian National Maritime Museum, 2 Murray Street, Darling Harbour, Sydney NSW 2000
Something BIG is rolling your way...
Join us for the 2026 Big Red Roll & Stroll, supporting Summer Camp for kids living with a neuromuscular condition.
WHEN: Saturday 16 May
Be the first to know when registrations open and get all the details by registering your interest.
Moving Forward for MDNSW – Bridget’s Larapinta Adventure
Meet Bridget. A devoted mum and full-time carer to her son, Jamie, who lives with Duchenne muscular dystrophy.
Adventure has always been part of their lives. From bush walks to beaches and far-off places, they’ve always found ways to explore together.
This July, Bridget is taking on a new kind of adventure – the Larapinta Trail. It’s a huge personal challenge. She’s walking to stay strong, fit and healthy for her family. But also for something bigger – to give Jamie and other children with muscular dystrophy the opportunity to find their own adventures through MDNSW Adventure camps.
Her journey along the Larapinta Trail helps make those moments possible. “All young people look for sparks of inspiration and the opportunity to try new activities as part of finding their people, their path, their voice and themselves,” she says.
Sound like the adventure for you? Don’t miss out on joining this life-changing challenge.
How A Dash of Adventure brings wheelchair adventures and imagination to life for kids
Best friends Mitch and Julie love exploring the world. They have turned that passion into A Dash of Adventure, a children’s book that celebrates curiosity, family and seeing the world in your own way.
The story follows Millie, who uses a power wheelchair and her brother, Dash. Together, they turn ordinary moments into magical adventures. Mitch is a long-time MDNSW community member, and Julie is a strong advocate for inclusion. They hope the book inspires children and families, classrooms and communities to embrace imagination and accessibility.
Meet Stephanie, NDIS Support Coordinator at MDNSW
Stephanie is one of our dedicated NDIS Support Coordinators, helping clients build independence and achieve their goals. No two days are the same – she might be taking calls to support clients, checking in during home visits or connecting families with the services they need.
Stephanie is passionate about working directly with clients and their families to make a real difference.
“My 'why' is supporting people to achieve their goals no matter how big or small,” she says. “Seeing someone grow in their confidence and independence is what drives me every day.”
We asked her what the best part of her work day is – “Real conversations and genuine moments as well as lots of coffee!”
Her commitment and enthusiasm are part of what makes our team and our community so special.
Have your say on sleep and breathing treatment
A research group from the Prince Charles Hospital in Brisbane has released a survey to collect information on what Australians living with Muscular Dystrophy and other neuromuscular conditions want from their sleep disorder treatment.
Anyone living with neuromuscular disease and their carers can complete this survey if they understand how sleep and breathing problems affect them and want to share their views on future care and research.
The survey takes 10-15 minutes to complete. You don’t have to do it all at once, you can go at your own pace. The survey is open until April 30. Your response is anonymous.
PDCN Workshops March
In March, the Physical Disability Council of NSW (PDCN) is offering free online and in-person workshops.
Topics include:
- Speaking up for yourself and communicating your needs
- Changes to NDIS legislation and how it affects you
- Better understanding what you can use your NDIS funding for
- Post-traumatic growth (PTG) and getting the most out of life
In-person sessions run on the Central Coast from 3 – 5 March, giving you an opportunity to learn with others, mingle and enjoy free lunch!
Thanks to our Official Partners
