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Welcome to your April 2026 issue of Talking Point!
April is shaping up to be a month full of opportunity – to connect with others, share your voice and be part of new experiences.
In this edition, you’ll find a range of Peer Connect sessions designed to support your everyday life, from planning for emergencies to navigating accessible travel and assistive technologies.
You’ll also see that the countdown is well and truly on for the Big Red Roll + Stroll! As our biggest community fundraiser of the year, it will help make programs like Summer Camp possible.
And as we reflect on a very special Sunday Soirée, I’m reminded again of the generosity and care that is at the heart of this community.
I encourage you to have your say in our 2026 Community Survey, explore what’s coming up, and take part in the moments that feel right for you.
Yours sincerely,
Jess Henry
CEO, MDNSW
Register for any event upcoming event via our new online form →
SMArties
WHEN: Tuesday 21 April 2026, 7 – 8pm
WHERE: Online
SMArties is a fun online catch up for people living with Spinal Muscular Atrophy (SMA). It’s your chance to connect with like-minded peers, share experiences, swap tips and stay in the know. Smart, savvy and supportive – this group is about learning together.
We’ll be joined by Neurologist Dr Christina Liang from Royal North Shore Hospital, who will share updates on gene therapy and emerging treatments.
InfoShare: Planning for Emergencies
WHEN: Tuesday 28 April, 12 – 1pm
WHERE: Online
Emergencies can happen without warning – from power outages and extreme weather to sudden changes in health or support. This session focuses on practical ways to prepare, plan and feel more confident when the unexpected occurs.
In this peer‑led session, we’ll explore:
- Practical steps for staying safe, connected and comfortable during an emergency
- Who to involve in your emergency plan
- Simple tools, checklists and strategies to help you prepare ahead of time
LGMD Connect
WHEN: Tuesday 5 May, 7 – 8pm
WHERE: Online
Living with LGMD can shape many of your relationships – from partners, family and friends to colleagues, carers and support teams. You don’t have to navigate that alone.
LGMD Connect is a welcoming space to come together with others who understand to share experiences and talk openly about building, maintaining and managing healthy relationships as life changes.
ATSA Independent Living Expo
WHEN: Wednesday 13 May, 11am – 3pm
WHERE: Sydney Showground, Sydney Olympic Park
Join us at the ATSA Independent Living Expo to explore the latest assistive technology, services and ideas that support independence and participation. This event is a chance to:
- Trial equipment
- Compare options
- Speak directly with suppliers, OTs and service providers
- Connect with others who share similar lived experience
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:
- Flying with a powerchair or wheelchair
- Accessible cruising options
- 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!
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!
Have Your Say in our 2026 Community Survey
We’re inviting you to share your experience and perspective as part of our 2026 Community Survey.
This survey is for people living with a neuromuscular condition, their families, carers and supporters who engage with our services and programs.
It takes around 8 minutes to complete. Your feedback helps guide our services and advocacy so that we can better support the neuromuscular community.
PLUS! As a thank you, everyone who completes it will receive a $25 VISA Gift Card.
One Month Countdown until the Big Red Roll + Stroll
The countdown is on. The Big Red Roll + Stroll is just one month away!
This much‑loved community event brings us together to roll, stroll and raise vital funds for people living with neuromuscular conditions.
Funds raised through this year’s BRRS will directly support MDNSW’s Summer Camp – a life-changing week where kids build confidence, independence and lasting friendships in a fully accessible environment.
If you’re already signed up as a fundraiser, we’ve got simple tips and tools to help you share your page, build momentum and reach your fundraising goal!
A Sunday Soiree to Remember
Our annual Sunday Soirée on 22 March brought together members and supporters of the neuromuscular community to showcase the power of connection and belonging.
We listened to reflections from community members Jamieson, Scott and Bridget. They spoke about the ways MDNSW programs have supported their personal journeys toward feeling understood, connected and supported.
Genuine warmth and generosity shaped the afternoon. We’re grateful to everyone who joined us and left feeling reflective, inspired and more deeply connected to the neuromuscular community.
A big thank you to those who donated prizes, volunteered and gave generously on the day. Your support allows us to help more people in the neuromuscular community feel seen, supported and confident as they navigate their journey.
And if you’d like to continue that impact, your support is always welcome →
Research, Readiness and Real-World Insight at FSHD Friends
Our recent FSHD Friends session brought together people living with Facioscapulohumeral Muscular Dystrophy from across NSW.
We were joined by guest speakers Emma Weatherley and Peter Smith from FSHD Global, who discussed the latest developments in FSHD research, advocacy and clinical trials.
They also introduced the Cure FSHD Registry and Clinical Trial Passport – tools designed to strengthen research readiness and connect people living with FSHD to clinical trials.
One participant reflected:
“So inspiring to see the power of collaboration … and how FSHD Global is making sure people living with the condition can get access to clinical trials. Incredible efforts that are changing lives.”
Finding and Keeping Good Support Workers
Our first InfoShare of the year was a thoughtful space for community members to come together and reflect on what it means to build and sustain a team of support workers.
From how to find and prepare for support workers to setting clear expectations early and using simple systems, people left with practical takeaways to help them improve communication and consistency in their daily lives.
One attendee shared, “I always get some great little tips from these sessions!”
Meet Mimi – Community Fundraising Specialist
Mimi is our vibrant Community Fundraising Specialist. She brings more than four years’ fundraising experience and over a decade working in supporter services, volunteering with not‑for‑profits and advocating for positive change in her community.
Last year Mimi was named the Fundraising Institute of Australia (FIA) NSW Young Fundraiser of the Year.
Mimi leads community fundraising here at MDNSW, including the Big Red Roll + Stroll and Community Heroes program. A big part of her role that often goes unseen is the long-term planning that goes into our big fundraising events.
“Events can take months and months of planning! To put on a really great one day event - like the Big Red Roll + Stroll, we work on them year round. (Yes, that means there is already brainstorming happening for BRRS 2027 - stay tuned!)” she says.
Keep an eye out for her messages as we count down to BRRS on 16 May!
She loves connecting with our amazing community and seeing events come to life.
Have your say on neurological care and research in Australia
Neurological Alliance Australia (NAA) is currently running its very first national survey to better understand gaps in neurological care, support and research.
Insights from people with lived experience, carers and health professionals will help NAA shape national neurological advocacy and policy, improving outcomes for people living with neurological conditions.
We encourage our community and networks to participate and share their perspectives.
The survey closes on Friday 8 May 2026.
Your Chance to try a Fun, Inclusive, All-Abilities Sport with Boccia Australia
WHEN: Wednesdays 10:30am – 12:30pm, starting 22 April
WHERE: Blacktown Disability Sports Centre
Boccia Australia is running a 6-week Beginner’s Boccia Program for anyone curious about Boccia or interested in getting involved in a new sport. It’s an all ages, all-ability opportunity.
You can expect to:
- Learn the basics of Boccia and try the sport in a fun, supportive environment
- Find out more about participation opportunities and find your local club
- Explore development pathways to higher-level competition
Free PDCN Workshops May
In May, the Physical Disability Council of NSW (PDCN) is offering free online and in-person workshops.
Topics include:
- Developing communication and negotiation skills for success
- Nurturing yourself and enhancing your wellbeing
- Self-advocating for employment opportunities
- What does trauma look like, and practical tools for growth after negative experiences
Thanks to our Official Partners
