Welcome to your September issue of Talking Point.

Coming into the Spring season, I love using this time as an opportunity to pause, reflect and remind myself on just how far we’ve come as an organisation. As we continue to offer you a host of exciting events and programs, we are also looking forward and planning ahead for the years to come. At MDNSW, that means working behind the scenes and reviewing what works and what we could do to better serve our community.

With so many exciting things happening in the pipeline, we can't wait to share all the highlights with you. In the last few months we've had our 2024 Adventure camp, our annual Neuromuscular Information and Research Day and other online events. Read on below to find out more!

Stay tuned for more details on upcoming events, new initiatives, and ways you can get involved. Your support and enthusiasm make everything possible, and we’re thrilled to embark on these new adventures together.

I’m so proud of the work our teams do each and every day to serve our neuromuscular community and I’m truly grateful for the support of our community, volunteers, donors and partners. 

So please enjoy this issue of Talking Point, made purposefully for you and your families. We hope to continue to serve you in the best possible way. 

Yours sincerely, 

Charlotte Sangster 

Charlotte Sangster, (she/her)
CEO, MDNSW

Membership Renewal

MDNSW Membership renewal is now available! Paid membership is just $22 per year gives you voting rights and the opportunity to provide input towards the direction of MDNSW at our Annual General Meeting.

With your membership and support, we will continue to evolve, adapt, and empower our community for many years to come.

Thank you for being a vital part of Muscular Dystrophy NSW and supporting us to better serve our neuromuscular community

Please note that paid membership is optional at MDNSW. By not taking it up, your access to our usual programs and services will not be affected.

Meet Camper Cody

Adventure Camp is a place where teamwork, challenges and fun come together in the great outdoors. This year Adventure Camp was held at the Tops Conference Centre, with activities such as bottle rockets, abseiling, and high ropes. 

We recently sat down with Cody, aged 11, to get an exclusive insight on 2024 Adventure Camp - the ins and outs, and the inside scoop of what happens at Adventure Camp!  

Neuromuscular Information and Research Day (NIRD) 2024

Saturday 24 August was MDNSW’s annual Neuromuscular Information and Research Day (NIRD). NIRD brought together a range of medical professionals as well as individuals and families living with neuromuscular conditions, all with the common purpose of learning more about the current research and experiences of neuromuscular conditions in today’s landscape.

We were lucky to be joined by a range of professionals who hosted sessions about navigating the NDIS, recent treatments, and even transitioning into education for children living with neuromuscular conditions. Our keynote speakers shared research findings, shedding light on the latest advancements and emerging treatments.  

Special thanks to everyone who logged in and joined us for NIRD. Though we were not physically together, the connections made, and the knowledge shared during this event have strengthened our community and our collective mission. We look forward to seeing you at future events and continuing our shared journey toward more research and strengthening our community. 

Carer's Brunch

All carers and family members are welcome.  
WHEN: Thursday 17 October 11 – 1.30pm 
WHERE: Coffee Club, Ryde-Eastwood Leagues Club 
Free parking is available opposite West Ryde Station.  
RSVP by 12 October at info@mdnsw.org.au or on 9888 5711 

Adventure Camp 2025!

Exciting news – our 2025 Adventure Camp has been officially locked in!  
WHEN: Sunday 13 – Thursday 17 April 2025 
WHERE: The Tops Conference Centre, 

Register your interest early by contacting us at info@mdnsw.org.au or call (02) 9888 5711. 

Community Day 

Mark your calendars! Saturday 30 November at 11am, we will be having our annual Community Day. Join us for face painting, goodie bags, and even a visit from Santa!  

For more information, or to register, contact our team at info@mdnsw.org.au or call (02) 9888 5711. 

Summer Camp - Save Your Spot!

Have you heard? Summer Camp is back for 2025! Join us on Monday 13 January – Friday 17 January at Sydney Academy of Sport and Recreation in Narrabeen, NSW for some Summer Camp fun.   

Register now to secure your spot! Contact our team on info@mdnsw.org.au or call (02) 9888 5711 now.    

MDNSW and Dooley's Lidcombe

Last month, Dooleys Catholic Club Lidcombe generously donated $4,600 to MDNSW in support of our Camps program. On top of this, in May Dooley's generously waived our room hire fees, to host our Peer Connect Makers Day event. Dooley's support enables MDNSW to continue to offer programs and support for those living with neuromuscular conditions. "We are immensely grateful for Dooleys' support," said Prue Steel, Fundraising Manager, “Their support allows us to maintain our commitment to delivering meaningful programs and support our neuromuscular community.”

PDCN Workshops 

The Physical Disability Council of NSW are running a series of online workshops throughout September. These workshops are free for people with disability and their parents or unpaid informal supports.

Workshops will cover topics such as the NDIS, employability and expanding your potential.

A Day in the Life - Fletcher, the Marketing Intern 

My name is Fletcher. My family and I have been involved with MDNSW since I was diagnosed with Duchenne Muscular Dystrophy in 2005, when I was just five years old. Now, at 23, I’ve graduated with a degree in graphic design from CSU Wagga Wagga.

Living with Duchenne Muscular Dystrophy presents its fair share of daily challenges, but it also brings some positive aspects. My parents have instilled in me the importance of perseverance and a positive mindset. They’ve taught me not to give up, and that with the right attitude, I can overcome many obstacles. Their unwavering support has been crucial in shaping my approach to life, allowing me to navigate it as effectively as possible. 

1. What’s a day in the life like as a Marketing Intern? The day in the life as a marketing intern are very different with a variety of tasks, from social media posts to admin work and graphic design, keeping things fresh and exciting. 

2. Being part of our community, how does it feel to see the other side of how MDNSW team operates? Being part of the MDNSW community and to see how the other part operates and how there is a dedicated team that works together to make everything run smoothly. Seeing the collaboration and the specializations in these different teams, I have learnt about the importance of teamwork and how various roles contribute to the overall success of the organisation. 

3. In your spare time, what do you like to do? In my spare time I love to watch movies, read comic books, build Lego, and play video games . These are the ways I like to relax and unwind.  My favourite marvel character would have to be Iron Man as he is intelligent, innovative, and his evolving technology becomes more advanced as shown throughout Marvel movies and also the comics make him a standout character for me. 

4. What is your advice for young leaders in our neuromuscular community? My advice for young leaders in the neuromuscular community would be asking questions and challenging them can lead to significant progress and improvements. It’s important to remember that even small efforts can have a big impact, both now and in the future to speak up and push boundaries. It can inspire others to do the same and drive positive change in the community.