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 Muscular Dystrophy NSW (MDNSW) for many years (more than seven years, in fact, for most!). 

Here are six key themes that emerged from the survey and what we’re doing about them. 

1. A strong, supportive community 

You told us MDNSW feels like a safe, welcoming place. Many of you feel more confident, more connected and more supported because of our programs. You also highlighted the power of peer connection and the friendships that have grown through camps, retreats and events. 

What we’re doing: 
We’re continuing to invest in programs that build connection – and we’ll be inviting more community members to share their stories through blogs and social media spotlights. 

2. We could be doing more to reach new people 

Only a handful of respondents had joined MDNSW recently. And while many heard about us through neuromuscular clinics or friends, we’re still missing some families, particularly those outside metro areas or who are newly diagnosed. 

What we’re doing: 
We’re developing a new program called the New Diagnosis Companion to offer early support to families. We’re also trialling a virtual welcome event and have plans in the pipeline to better connect people in regional NSW – watch this space! 

3. Making advocacy more visible 

Most of you trust that we understand the issues that matter – like accessibility, NDIS reform and broader disability rights. But not everyone was aware of the advocacy we’re doing behind the scenes. 

What we’re doing: 
We’ve added a dedicated advocacy section to our Talking Point newsletter. We’re also exploring ways to bring more lived experience voices into our advocacy work. 

4. More practical information, please 

You want content that’s useful, relatable and real – from navigating the NDIS to tips on assistive tech, travel and daily life. 

What we’re doing: 
We’re in the early stages of designing new ways to get you the information you need, at the right time and from the right people. Think blogs, info sheets, web pages – all co-designed with lived experience in mind. We’re also refreshing our social media strategy to focus on sharing practical content that connects and informs. 

5. Digital channels are working – but can be even better 

You gave solid ratings to our website, social media and Talking Point newsletter – but there’s room to lift engagement further. 

What we’re doing: 
Our brand-new website has just launched, designed with ease of use at its core. Feel free to explore while you’re here! We’ve also started rolling out fresh social media templates for a more polished and consistent look.  

6. And one more thing: fundraising 

Nearly half of you have donated in the past two years. Thank you from the bottom of our hearts. Many of you said you’d like to give, whether through direct donations, events, volunteering or even leaving a legacy gift. 

What we’re doing: 
We’ll keep running our tax and Christmas appeals, as well as our flagship community fundraising event, the Big Red Roll & Stroll. Plus, we’ll be developing a bequest strategy to make it easier to give in the way that suits you. 

Thank you for guiding us 

Your feedback confirms we’re on the right track but also shows where we can grow. If you didn’t get a chance to take part, have more to share, would like further information or to clarify any findings, we’re always up for a chat.   

You’re the heart of MDNSW. We wouldn’t be here without you. 

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