5 minute read
FROM THE CEO'S DESK WITH STACEY THORPE
This year has felt like we’re taking MND Queensland on the road – literally. Our aim has been simple: reach as many Queenslanders as we can and give more people than ever a chance to rally against motor neurone disease. That means stepping well outside the metropolitan bubble and waving the MND flag in towns and regions that haven’t seen us before. The response has been nothing short of extraordinary.
The Walk to Defeat MND series is the clearest sign of that shift. Already in 2025 we’ve held walks on the Gold Coast, Brisbane, Townsville, Cairns and Bundaberg. Each walk has been its own festival: sausages sizzling, kids and dogs running around, and more Walk to Defeat T-shirts than you can count. We’re still on the move, with Hervey Bay, Toowoomba, the Sunshine Coast and Redcliffe all on the calendar before year’s end. Attendance numbers have smashed expectations everywhere we’ve been, with first timers walking alongside seasoned supporters and whole families pushing prams or wheelchairs together. By December we’re on track to see more people walking to defeat MND in Queensland than ever before. Our staff and volunteers have spent countless hours on the road –often thousands of kilometres – bringing that sense of community to where people live, because it’s important that Queenslanders don’t have to travel to Brisbane to feel supported.
That sense of ownership isn’t limited to our own events. The community has taken fundraising into its own hands in ways that continually surprise and inspire us. There have been home grown BBQs, high tea parties, rugby league fans coming together for a Long Lunch and MND Round in Runaway Bay, runners tackling huge distances and kids collecting cans under the Containers for Change scheme. Supporters have even used our round up app to donate the spare change from their everyday purchases – a modern twist on dropping coins into a charity tin. Individuals have held birthday fundraisers instead of receiving gifts. We don’t track these activities to boast about the totals – though some have been impressive – but to remind ourselves that every dollar truly does count. Knowing that a neighbour has baked scones or a work team has fired up the grill for us is as heartening as any grant or corporate cheque.
That collective spirit was palpable at two very special events this year. In March, we were honoured to be supported by our community at the Parliamentary Friends of MND event at Parliament House. Having our supporters beside us at Parliament House as we called for better funding and visibility made our advocacy more than a policy discussion; it was a living, breathing representation of the people affected by these decisions. Then on
Global MND Awareness Day, we gathered for our Cornflowers and Butterflies event. It was unlike anything we’d done before: a mix of ceremony and reflection where we planted blue cornflowers in honour of those living with or lost to MND and released live butterflies to symbolise hope. People leaned on one another, laughed and cried together, and left feeling both connected and uplifted. Many told us it was “exactly what we needed”.
When we say “community,” we also mean the hundreds of clients and carers we work with across the state. Your support – whether through walks, donations or simply turning up – has allowed us to keep innovating. One of the most significant outcomes is the launch of our psychology service. For the first time, people living with MND and their carers can access tailored psychological support through MND Queensland, with no out of pocket fees thanks to community contributions. It has been a long held dream to address the emotional and mental load of MND alongside the physical, and we’re humbled that we can now offer it. Likewise, the Carers Program we introduced this year acknowledges the unique challenges faced by those who support loved ones with MND. It offers connection, advice, resources, education, respite and support – and we know from early feedback that it’s making a difference.
All of this progress rests on a simple truth: we feel embraced by our community. Whether we’re celebrating a walk’s success in Townsville, comforting someone at an awareness day ceremony or sitting down with carers in a new support group, we are constantly reminded that we are part of something bigger than ourselves. That sense of togetherness fuels us to keep pushing – to travel further, to offer more services, to lobby harder for the rights of people with MND. We’re determined to stand up to this awful disease and demand that those living with it are seen and supported in the way they deserve. At the same time, we remain deeply grateful and humble. We know we’re entrusted with your donations, your stories and your hopes, and we don’t take that trust lightly. As the state’s leading provider of MND supports, we promise to honour it by doing everything we can to make life better for Queenslanders impacted by MND – until the day this disease is no longer part of our lives.
