Muscular Dystrophy NSW

15/10/2026

If chatting with other women about the things that matter to you sounds like something you need before the year wraps up, join us for the final Women's Network catch-up of 2026. 💜

🗓️ Wednesday 4 November
⏰ 7–8pm
💻 Online

Many women have shared that they love coming together for the honest conversations, shared experiences and sense of connection this network offers.

👉 Register at mdnsw.org.au/register-for-an-event/

14/10/2026

Who will you see at Community Day this year? 💙

The friend you only see once a year, but pick up right where you left off.

The family who just gets it.

The person you've met online and can't wait to meet in real life.

The familiar faces who make you feel welcome and the new ones who might become lifelong friends.

Community Day is a chance to reconnect, share stories, make memories and spend time with people who understand your journey. So, who are you hoping to see this year? 👀

📍 Club Parramatta
📅 Sunday 29 November 2026

👉 Register at https://events.humanitix.com/community-day-2026-b8xa7uw5?c=organicsm

13/10/2026

🚨 Have you ever thought about what you would need in an emergency or disaster?

The NSW Reconstruction Authority (RA) is developing its first Disability Inclusion Action Plan and wants to hear from people with disability, families and carers.

If you live with complex mobility, equipment or support needs, your experiences matter. Whether you've lived through a disaster, prepared an emergency plan, or supported someone who has, your feedback can shape how information, services and support are delivered before, during and after emergencies.

📅 The survey is open until 22 October 2026.

👉 Complete the survey at

NSW Reconstruction Authority

12/10/2026

This National Carers Week, we're celebrating the people who show up every day with care, patience, advocacy and support 💙

Whether they're coordinating appointments, providing practical help or simply being there when it matters most, carers make an incredible difference in the lives of people living with neuromuscular conditions.

To every parent, partner, sibling, family member, friend and support person: thank you.

☕ If you'd like a little extra support, join us at our Carers Morning Tea this Wednesday for a relaxed morning tea and a chance to take some time for yourself. Register at https://mdnsw.org.au/event/carers-morning-tea/

09/10/2026

Calling all Christmas crafters and planner lovers! 🎄✨

We're getting festive and looking ahead to 2027 at next month's Maker's Day.

Come along to create your own Christmas crafts, decorate a 2027 planner and leave with something handmade for the festive season and the year ahead.

📅 Friday 6 November, 11am - 3pm
📍 PHIVE Parramatta

👉 Register now at https://mdnsw.org.au/event/makers-day-nov/ and join us for a fun day of making, creating and getting organised!

08/10/2026

Everyone comes to Community Day for a different reason🎄💙

For some people, it's to catch up with friends they haven't seen all year. For others, it's to watch their kids enjoy festive activities, take family photos, share a great meal or simply spend time with people who understand.

This year, we're bringing it all together at our exciting new venue, Club Parramatta.

📅 Sunday 29 November
📍 Club Parramatta

So tell us... What are YOU most looking forward to? Comment with your emoji to let us know!

👉 Register at https://events.humanitix.com/community-day-2026-b8xa7uw5?c=organicsm

07/10/2026

Experience the thrill of Powerchair Football ⚽

Curious about one of Australia's fastest-growing inclusive sports? Join us for an afternoon of skill building, action and community as you discover what Powerchair Football is all about.

Watch experienced players in action, learn the fundamentals of the game and jump on the court to give it a try yourself!

Plus, stick around afterwards for lunch and a chat with fellow community members 🍴

📅 Sunday 1 November, 2–4pm
📍 Blacktown Disability Sports Centre

👉 Register at mdnsw.org.au/register-for-an-event/

07/10/2026

Research Opportunity 👉 Help improve future support for people living with Facioscapulohumeral Muscular Dystrophy (FSHD).

People living with FSHD, as well as family members and carers, are invited to take part in an international survey exploring palliative care and advance care planning.

The FSHD-Global Research Foundation is working with researchers and clinicians from Australia and Europe to better understand the information, support and healthcare needs of people living with FSHD.

The findings will help shape practical guidance and resources
for people with FSHD, their families and healthcare professionals.

• Open to people living with FSHD, family members and carers 📝
• Takes approximately 20 minutes
• Anonymous and voluntary
• Must be completed in one sitting, as progress cannot be saved ⚠️

The more people who participate, the stronger the evidence will be to improve information, support and care for the FSHD community.

Learn more at https://fshdglobal.org/how-we-help/palliative-care-advance-care-planning/

Complete the Survey at https://data.castoredc.com/survey/K2C6TJ8J

06/10/2026

This week is Becker Muscular Dystrophy (BMD) Awareness Week 🧬

Did you know? Becker Muscular Dystrophy shares the same genetic cause as Duchenne, but symptoms can appear later and often progress more slowly. Because people with Becker still produce some dystrophin protein, the condition may not always be visible, especially in the early years.

Living with Becker can involve challenges that others may not see, including muscle pain and cramps, fatigue, reduced exercise tolerance, and the need for ongoing heart health monitoring🫀

That's why access to specialist care, information and support is so important.

You can learn more from leading experts at the Becker Education and Engagement Day on Friday 23 October to discover the latest developments in Becker Muscular Dystrophy and connect with others in the community.

🔗 Learn more at https://saveoursons.org.au/pages/beed-2026

06/10/2026

A few snaps from our MD Women’s Network outing to the Botanic Gardens on 26 September 🌿☀️

We spent a beautiful spring day exploring the gardens, enjoying a guided tour from one of our members and learning more about Australian natives, fragrant blooms and some incredible century-old trees!

We wrapped up with a shady picnic, cold drinks, sweet treats and plenty of conversation, including sharing a few fun facts inspired by the day’s themes of nature and food. 🧁

Most of all, it was lovely to connect with women from across NSW, have a chat and spend some time together outside the usual routine. 💚