2025 was a big year for the MND Carers Program…. And 2026 is set to be even bigger!
Let’s recap what we achieved together….
Our goal was to boost the number and engagement of MND carers and refine our service offer.
We started the year by connecting with each of our existing carers, speaking directly to 84% or carers in the program and with our MND NSW staff who work closely with carers. From these conversations we got a good sense of who MND carers are, what they are going through, the challenges they experience, the strategies that they can learn from one another and what their needs are. Read a summary - A day in the life of a MND carer: What you've told us
Through this collaborative approach, we increased our numbers by over 100% and as a result we saw more carers coming along to the Carers Kitchen Table, our key support group where carers can meet others who know what they are going through, exchange tips and tricks and know that they are not alone.
As Lynette describes in our 2025 Impact Report – “One of the really helpful things I’ve found during this MND journey is the Carer Kitchen Table evenings…I’m hearing and learning a lot of things there which is good, I find it a wonderful help”.
We continued with our monthly blog and started a monthly update called the ‘Carers Catch up’, recognizing that though carers are busy they still want information that is relevant to their caring role.
Monthly blog articles included:
- Practical support and tips for MND/FTD carers
- Supporting your loved one at end-of-life: General strategies for carers
- Manual Handling for Carers
- Along with several others, found on the MND NSW news page.
For National Carers Week we hosted five events, led by our Advisor team where we celebrated MND Carers over lunch, morning tea or online. Carers learnt about how support groups and self-care strategies can help maintain their resilience, especially when the going gets tough. A number of carers shared their feedback about the events, read a summary - Carers Week 2025 - Thank You to Our Carers
MND NSW acknowledged the amazing work that carers do. Each participant of the MND Carer Program received a carers pack which contained a bookmark full of self-care ideas, reminders to pause and have a break, and cornflower seeds to brighten their day and their gardens.
Several MND carers generously shared their personal stories of what it is like to be a MND carer with all the joys and challenges that it can bring. These stories give us a better understanding of the day-to-day role and hopefully other carers can see themselves in these stories. Though each experience is unique, there are many things that they have in common. Read their stories - National Carers Week 2025
We designed and delivered a series of webinars with experts tailored to carers’ needs ranging from topics related to Carers Gateway, the mental health and wellbeing of MND carers and dealing grief and loss over the holiday season. View the Supporting Psychological Wellbeing of MND Carers Webinar on the MND Hub here.
Working collectively with other state associations we established a National MND Carer Coordinator Working group where we share information, strategies and resources, identify areas of collaboration, support carers and cross-promote state-based activities nationally and contribute to MND carer advocacy to MND Australia.
In 2026 we want to build on these strengths, provide ongoing MND Upskill and Newly Diagnosed sessions, Day of Hope and Remembrance, MND walks, support our past carers in their bereavement and refresh our online modules through the MND Hub for easy access. All our events and support groups are advertised throughout the year on our website - All Events
But most of all ….we want to hear from you so keep your ideas and feedback coming! Know that MND NSW is here for you and together we can continue to create a community of support.
Join us in the MND NSW Carer Program!
If you are a carer and haven’t yet had a chance to join the MND NSW Carers Program, click here and complete our Online Intake Form or call our Info line on 1800 777 175.
We will send you a Service Agreement to review and sign.
The MND NSW Carer Program is FREE to join for all carers supporting a person living with MND.
In the words of Neale Daniher 2025 Australian of the Year ‘No matter the odds, no matter the diagnosis, we all have the power to choose to fight, to choose our attitude, to choose to smile and choose to do something. Because the mark of the person isn’t what they say, it’s what they do.
