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Welcome to your March 2026 issue of Talking Point!
March has been a month full of connection, celebration and advocacy across our community.
We began the month with Women’s Week, celebrating the women in our community at our International Women’s Day riverside luncheon. We also recognised Carolyn Campbell-McLean who was a finalist in the NSW Women of the Year Awards. You can read more about these moments in this issue.
This month has seen a heavy focus on wellbeing, with online Peer Connect catchups offering spaces to share wellness practices. We’re also excited to share the launch of Sydney’s newest Boccia club – led by community member and Paralympian, Jamieson.
Looking ahead, our Sunday Soirée is just around the corner. It’s your final chance to join us to celebrate Pathways to Belonging and support the connections that make such a difference in people’s lives. Plus, Big Red Roll + Stroll registrations are open!
I hope this month’s newsletter leaves you feeling informed, inspired and connected – and encourages you to take part in the opportunities ahead.
Yours sincerely,
Jess Henry
CEO, MDNSW
Celebrating Carolyn
Community Leadership in Action
This International Women’s Week, we proudly celebrated Carolyn Campbell-McLean, our Senior Community Support Specialist. She was a finalist for the NSW Women of the Year Awards 2026 in the Community Hero category. Carolyn’s nomination recognises her leadership, advocacy and unwavering commitment to creating positive change for people with disability.
Carolyn uses her lived experience to build connection, amplify voices and challenge barriers faced by people with disability. This achievement was a moment of recognition for Carolyn and for those whose voices and experiences she champions every day.
The Community Hero award was presented to the founders of Gidget Foundation Australia. Carolyn was honoured to attend the ceremony, supported by her family and MDNSW CEO, Jess.
Carolyn shared, “It was so awesome to spotlight some of the incredible work of a diverse array of wonderful women, and especially inspiring to hear about ‘The Ones to Watch’ – girls aged between 7 and 15 who are doing so much good in the world!”
We are so proud to recognise Carolyn’s contribution. We thank her for the compassion, strength and leadership she brings to our community.
Register for any event upcoming event via our new online form →
FSHD Friends
WHEN: Tuesday 24 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 Weatherley, CEO of FSHD Global and a proud member of the FSHD community, will join us to talk about the latest news and clinical trials in the FSHD space.
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.
MD Women's Network
WHEN: Wednesday 1 April, 7 – 8:30pm
WHERE: Online
The MD Women’s Network is a new peer group for women in our neuromuscular community to connect, share experiences and shape what support looks like for them.
The network offers space for conversation, leadership, mentorship and discussion of women’s health and lived experience.
Our first meeting will be online, where we’ll share ideas for the network, plan what’s ahead and explore ways to create an ongoing, supportive community led by the voices of women.
Peers in Action: Family Outing
WHEN: Wednesday 8 April, 10am – 3pm
WHERE: 1 Showground Rd Sydney Olympic Park NSW 2127
For families and siblings of people living with a neuromuscular condition, join us for a light-hearted day out at the Sydney Royal Easter show. Enjoy all the excitement and showground fun, with the comfort of being alongside families who understand the journey you’re on.
This is a FREE event. Apply now to join us for the iconic Sydney Royal Easter Show experience.
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 at Wollongong Golf Club
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
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.
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.
Your final invitation to a Sunday Soirée
Time is running out to secure your ticket to Sunday Soirée 2026, celebrating Pathways to Belonging.
If you’ve supported MDNSW before, this is your chance to:
- Meet the people your generosity touches
- Share in moments of joy and connection with fellow fundraisers, community members and donors
- Celebrate the community that makes friendship, confidence and belonging possible.
Be there in person to see how your ticket, plus extra giving opportunities, create impact for people living with neuromuscular conditions.
WHEN: Sunday 22 March, 2 – 4:30pm
WHERE: Australian National Maritime Museum, 2 Murray Street, Darling Harbour, Sydney NSW 2000
Early Bird registrations for 2026 Big Red Roll + Stroll are OPEN!
The Big Red Roll + Stroll brings our community together to raise funds for children living with neuromuscular conditions. It’s for everyone – whether you're living with a neuromuscular condition, caring for someone with one, or just want to make a difference. Bring friends and family or go solo.
WHEN: Saturday 16 May
WHERE: Sydney Zoo
Early Bird pricing available now – 50% off.
PLUS get in before 1 April and go into the draw to win 1 of 3 $100 VISA gift cards.
Rare Disease Day Parliamentary Event
On 2 March, MDNSW attended the Rare Disease Day Parliamentary Event for People Living with a Rare Disease, hosted by Rare Voices Australia (RVA) and Parliamentary Friends of Australians Living with a Rare Disease.
The event brought together Members of Parliament and more than 100 people from the rare disease, disability, health and advocacy sectors.
The highlight of the event was the launch of the Rare Disease Disability Toolkit by RVA – a practical resource designed to support self-advocacy and improve understanding of disability systems.
You can access the toolkit here →
We’d like to thank our volunteer and community member Bridget Larsen for attending on behalf of MDNSW. Bridget’s support is ensuring neuromuscular voices are part of national conversations about equity and access.
Growing Together at International Women’s Day
On Friday 6 March, women from our community gathered for a sunny riverside lunch celebration for International Women’s Day.
We welcomed both familiar and new faces. Many women valued the chance to come together beyond their usual circles, bringing diverse stories together.
Everyone contributed to our Growing Together artwork and took part in a heartfelt sharing circle, generously offering their wisdom and lived experience.
Every guest left with a special gift. It was a meaningful afternoon that captured the strength, warmth and connection of our community.
As one participant wrote, “Thank you… MDNSW team for putting on such a fantastic event! It was so nice to catch up and connect with all the familiar faces and to make some new ones too! The venue was stunning, the food delicious and I felt, as I'm sure everyone did, very valued and important. And the gifts were an extra bonus!”
Wellbeing and Connection at the Myotonic Meetup
Last month, peers came together online for the first Myotonic Meet Up of 2026. We reflected on wellbeing and connection. Alongside open discussion and shared understanding, people were able to speak honestly about challenges, feel heard by others who understand, and take away practical resources.
Connecting with others who understand life with a neuromuscular condition matters. If you’d like to connect with a like-minded community through shared lived experience, explore our peer programs designed to support you.
No Journey Alone – Our 2026-2028 Strategy
For nearly 70 years, Muscular Dystrophy NSW has been here for people living with neuromuscular conditions and their families across NSW.
Now, we’re setting a new, refreshed strategy to guide our work from 2026 to 2028. Informed by community and shaped by lived experience, it sets a clear direction for how we will continue to support, connect and advocate for our community over the next three years.
This strategy belongs to all of us. Every person, every family and every voice in our community helps bring it to life — and we’re excited to move forward together.
Meet Maddy, Marketing & Engagement Manager
Maddy is our energetic and thoughtful Marketing and Engagement Manager. She brings more than eight years’ experience across the non-profit and for-purpose sector.
With a passion for brand strategy, storytelling and meaningful connection, she plays a key role in shaping how we share our impact and engage with the community.
“My day is always brighter when I get to read, write or witness a community story as it unfolds,” Maddy says.
“Sometimes that’s out at a program … Other times it’s quieter work at my desk: shaping our Impact Report, reviewing a video, or pausing over the latest photos. Having the opportunity to tell the stories of our community is an immense honour. It’s one that fills me with so much joy.”
You’ll often find Maddy at Peer Connect events, supporting conversation and collaboration, or behind the scenes refining our brand, developing strategies, and bringing ideas to life.
Sydney Blazers – A new Boccia Club by Paralympian Jamieson Leeson
MDNSW community member and Paralympian, Jamieson, has started a new Boccia club based in Ryde – the Sydney Blazers.
The Sydney Blazers host weekly training sessions on Saturdays. They include a variety of activities to suit a range of activity and skill levels – from practical drills for beginners, to full-rule games for more experienced players.
WHERE: Ryde Community Sports Centre
WHEN: Saturdays 12pm-2pm
WHO: People of all abilities and ages
COST: $15 per session (first session is free)
It’s an excellent opportunity to build confidence, connection and a little friendly competition. People with all types of disability are welcome.
Read more or become a Sydney Blazers member →
Join Disability Sports Australia at their free Newcastle Abilities Unleashed event
Disability Sports Australia runs a program called Abilities Unleashed which connects adults living with disability to local sports clubs. They help people experience a range of adaptive sports and recreation activities in a fun and inclusive environment.
This May, the program will be running in Newcastle. Participation is free.
At this event, you can expect to discover and try a range of local active opportunities and connect with other people who share similar recreational interests.
WHEN: Thursday 21 May, 10am – 1pm
WHERE: Newcastle Basketball, 27 Young Rd, Broadmeadow NSW 2305, Australia
Places are limited, so register for free now →
Free PDCN Workshops April
In April, the Physical Disability Council of NSW (PDCN) is offering free online and in-person workshops.
Topics include:
- Tips on building the skills and confidence to manage your own NDIS plan
- Changes to NDIS legislation and how it affects you
- Better understanding what you can use your NDIS funding for
- Nurturing yourself and enhancing your wellbeing
Community Input: Policy Updates
We’ve recently updated our Privacy Policy to make it clearer and easier to understand, and to ensure it aligns with the Australian Privacy Principles and Health Privacy Principles. The update also includes a new section on informed consent.
Thank you to community member Bridget Larsen for her time and expertise in reviewing and updating this policy. You can read the latest version here.
We welcome community input on our policies and frameworks. In the coming weeks, we’ll be seeking feedback on updates to our Services Agreement and Child Safety Policy.
Thanks to our Official Partners
