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Welcome to your July issue of Talking Point!
After a packed few months wrapping up major events (over 30 in-person and online events!) and planning the months ahead, we’ve had the chance to pause and refocus on what matters most to the people at the heart of MDNSW.
June brought us one of those moments that reminds us why we do what we do. The Mums’ Retreat was a powerful moment of connection for the mums in our community. Even after the program officially ended, some of the mums chose to stay a little longer, sharing a bushwalk and each other’s company. It spoke volumes and gave us a deeper perspective into the experiences of our community, reaffirming just how vital these shared spaces are.
We’re also in the early stages of developing a New Diagnosis Companion program, working closely with families across NSW to co-design it. Receiving a neuromuscular diagnosis can be overwhelming.
That’s why we want to reach out earlier to help families access the right supports at the right time. If you’re a parent or carer with ideas or lived experience to share, we’d love to hear from you. You’ll find more details on how to get involved in this edition.
A warm welcome to Andrew Grant, our new Service Delivery Manager, who will be stepping in while Allyce Rui is on maternity leave. Andrew brings great energy and perspective. We know he’ll be a wonderful support to our community! Sending our warmest wishes to Allyce as she begins this exciting chapter with her growing family.
Thank you for reminding us of our ‘why.’ This community is our compass.
Yours sincerely,
Jess Henry
Jess Henry
CEO, MDNSW
NIRD 2025 Topics & Speakers Announced
NIRD returns with a focus on expert advice, practical strategies and real-life experiences from those who know, understand and support life with a neuromuscular condition (NMC).
We’re excited to announce the first topics and speakers in the lineup:
Keeping Muscle Strength vs. Managing Fatigue Presented by Rehabilitation Specialist Dr Veena Raykar and Occupational Therapist Tess Southcombe from Concord Hospital.
Lived Experience Panel featuring voices from across the community:
- Joe Iaquinto, Disability Consultant
- Chris Carrero, HR & WHS Manager
- Bridget Larsen, Family Carer
There will be lots of great takeaways for people living with an NMC!
New Diagnosis Companion
We know that having a child receive a neuromuscular diagnosis can bring a lot of change – and every family experiences it differently. At Muscular Dystrophy NSW, we want every family to feel supported, informed and connected from the very beginning.
That’s why we’re creating the New Diagnosis Companion – a new program designed to support families in the early stages of diagnosis.
We’d love your help to shape it. For families who have recently received a neuromuscular diagnosis, there are a few simple ways you can get involved:
- Share your experience in a short, 5-minute survey
- Take part in a one-on-one consultation – online or in person
- Review our resources once we’ve developed them to let us know what’s helpful or what’s missing
Consultations will run through July and August 2025. As a thank you, families who take part in a consultation will receive a $50 gift voucher.
Summer Camp Open Day Coming Soon!
WHEN: Wed 14 Jan, 10am – 2pm
WHERE: Sydney Academy of Sport and Recreation
WHO: Families with children aged 6 – 18 who use powerchairs
Thinking about MDNSW’s camps for kids but haven’t seen one in action yet? Our Summer Camp Open Day is the perfect way to explore what makes camp so special!
Open Day will be held during Summer Camp in January so that families can explore what it's all about! Here’s what to expect:
🤝 Chat with our friendly team, carers and campers
🌟 Discover the energy and excitement of Summer Camp firsthand
🎉 Join fun activities and get a taste of the adventure
💬 Build confidence and ask questions in a relaxed setting
Meet Andrew, Our New Service Delivery Manager
We’re thrilled to welcome Andrew Grant to the MDNSW team as our new Service Delivery Manager, stepping into the role while our wonderful Allyce Rui begins her maternity leave.
Andrew brings not only a wealth of skills and experience to this role, but also a deep personal connection to our community – he’s been involved with MDNSW for eight years.
With a background in quality management, Andrew is passionate about creating opportunities that help people with neuromuscular conditions feel seen, supported and confident in their everyday lives. He’s especially excited to continue building programs that reflect the voices and strengths of our community members.
In his own words: “As a person with a neuromuscular condition, I understand the needs and requirements of the community and I'd like to ensure that the community is empowered and has the opportunity to learn and engage with each other. I'd really like to help people in their journey and help people expand their horizons.”
Whether you know Andrew from previous events or you’re meeting him for the first time, join us in giving him a warm welcome. We’re lucky to have him on the team!
Mums' Retreat Reflection
In June, eight mums came together for a weekend retreat in the Blue Mountains, for a gentle reminder of something often forgotten – taking time for themselves.
For many mums in the MDNSW community, life can be deeply rewarding, and also full of responsibilities that rarely pause. The Mums’ Retreat exists for this reason – to offer rest, connection and a chance to breathe.
Over the weekend, the group enjoyed bushwalks, solo time to reflect or read, laughs around the table, and even a high-tea celebration (all under warm sunshine and crisp winter skies)!
There were chats about family, real support from people who understand, and space for both tears and joy. These retreats are a vital part of how we care for those who spend so much time caring for others.
We are honoured to offer this space, and even more honoured to share it with such remarkable women.
A Cozy Christmas in July Catch-up for our Community
This month, 11 community members (plus one very sweet little guest) gathered at Ryde-Eastwood Leagues Club for our annual Christmas in July social lunch.
Plenty of familiar faces joined us this year to reconnect with friends, enjoy a warm meal, dress up in festive accessories (tinsel traces still lingering!) and delight in each other’s company.
It was a great way to bring joy and connection to our community by celebrating and spending time together!
A special shoutout to our very own Santa Patrick for setting the festive spirit high and snapping all the best moments.
Clients, Families & Friends Survey: What You Told Us
In March, we launched our annual Clients, Families & Friends survey, providing our community with the opportunity to tell us how we’re doing and where we can do better. After carefully reviewing your responses, today we’re sharing key findings.
Thank you to everyone who took the time to share your experiences. Your perspectives were thoughtful and honest. They’ve helped us improve and better support those in our neuromuscular community.
Most responses came from long-standing members of our community – people who know our programs well and have been part of MDNSW for many years (more than seven years, in fact, for most!).
Discover six key themes that emerged from the survey and what we’re doing about them in our latest blog.
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.
Adulting with an NMC InfoShare
POSTPONED until Young Adult's Retreat
Hear from experts and guest speakers with lived experience in our upcoming InfoShare session, including Izzi Harman, Chris Hastas, Jamieson Leeson and Deb Anderson!
From higher education and career pathways to navigating independent living, join us for real talk, practical tips and shared experiences.
Power Hour
WHEN: Thurs 24 Jul, 4–5pm
WHERE: Online
Power Hour is a regular peer catch-up for young men with Duchenne muscular dystrophy. The agenda? Part life advice, part gear chit-chat and part laughter.
SMArties
WHEN: Sat 9 Aug, 12–3pm
WHERE: Club Parramatta
Our next SMArties catch up is happening at Club Parramatta! 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.
Young Adults Retreat
WHEN: Fri 14 – Mon 17 Nov
WHERE: Atura Blacktown
Join us at our upcoming Young Adults Retreat from Friday 14 – Mon 17 November at Atura Blacktown. This year’s end-of-retreat party theme is ‘1990s’ so dig out your denim, grab a scrunchie and start planning your throwback look! A quick reminder that this getaway is fully-funded so you don’t need to use your NDIS funds for this retreat!
PDCN Free August Workshops Guided by Lived Experience
The Physical Disability Council of NSW (PDCN) continues its online and in person workshops in August, supporting people with disability, their families and support networks to build practical skills and confidence. Over four sessions in August you can discuss inclusive employment, self-advocacy, navigating NDIS legislation and self-management. Each workshop includes valuable real-world insights from guest speakers with lived experience.
Save Our Sons Gala for Duchenne and Becker MD
Tickets are now on sale for the 2025 Save Our Sons Sydney Gala, happening Saturday 30 August at Luna Park. The evening will raise awareness and funds for people living with progressive neuromuscular conditions, featuring a gourmet dinner and live performance by Jessica Mauboy. If you’re passionate about advancing research, support services and advocacy for all living with muscular dystrophy, this is a beautiful way to connect and contribute.
Thanks to our Official Partners
