From the CEO's Desk with Stacey Thorpe

As the holiday season draws near, our thoughts often turn to the joy of giving, the warmth of family gatherings, and the comfort of tradition. But for those impacted by MND, this time of year can be bittersweet. It’s a season that may bring cherished moments but also magnifies the challenges they face - challenges that don’t take a break, even for Christmas.

For me, this is not an abstract concern. I’ve seen firsthand how devastating an MND diagnosis can benot only for the person facing it but for their loved ones. I’ve spoken with parents agonising over leaving their children too soon, missing milestones like weddings or the joy of welcoming grandchildren. I’ve sat with families who are grappling with the emotional and financial burden of caregiving while processing the inevitability of loss. And I’ve listened as people share how the grief begins long before death, making each passing day a complex tangle of love, fear, and sorrow. These experiences have left an indelible mark on me. They are why I’m passionate about MND Queensland’s mission to provide the best possible support for individuals and families affected by this devastating disease. While we can’t cure MND - yet - we can and do make a difference in the lives of those who face it.

The Gift of Support

At Christmas, the idea of giving takes on a deeper meaning. For our community, it’s about more than presents under a tree - it’s about giving people living with MND and their families the tools, resources, and support they need to face each day with dignity and hope.

This year, as part of our Christmas Appeal, we’re asking for your help to expand our services. Specifically, we are working to establish an MND-specific psychology service - a much-needed addition to our existing offerings.

We know that the emotional toll of MND is immense. From the moment of diagnosis, the grieving process begins. People with MND and their loved one’s grapple with a future that feels stolen, a rollercoaster of emotions that can include anger, despair, guilt, and, sometimes, hope. The weight of these emotions can be crushing.

While our team offers understanding and practical support, we recognise the urgent need for specialised psychological care. An MND-specific psychology service will provide tailored support to help individuals and their families navigate the unique and complex emotional landscape of this disease. It will be a lifeline for those struggling to cope with the diagnosis, to plan for an uncertain future, and to find moments of peace amid the storm.

Christmas is a time when many of us reflect on the gifts we have been given - family, health, and the small joys that make life meaningful. It’s also a time to think about how we can give back.

Your support this Christmas can be transformational. A donation to our appeal is not just a financial contribution; it’s a gift of hope, resilience, and connection for those who need it most. It’s the gift of ensuring that no one in our MND community faces their journey alone.

Every dollar raised brings us closer to making this psychology service a reality, complementing our existing services like equipment loans, care coordination, and specialist Allied Health services. It’s about providing a holistic approach to care that addresses the physical, emotional and psychological needs of those living with MND.

Sharing the Spirit of Christmas

As you plan your own celebrations this year, I encourage you to think about what giving truly means. For families affected by MND, it’s not about material things. It’s about moments: the laughter around the dinner table, the comfort of a shared memory, the reassurance that comes from knowing someone is there to help shoulder the load.

Your generosity can make these moments possible. It can help us provide the support needed to turn despair into hope, isolation into connection, and fear into strength.

A Heartfelt Thank You

To our incredible community - thank you. Your compassion, dedication, and generosity are what make our work possible. Whether you’re a donor, a volunteer, or an advocate, you are part of a movement that brings light to some of life’s darkest moments.

This Christmas let’s come together once again to give the most meaningful gift of all: the gift of support, understanding, and hope for those facing MND.

From everyone at MND Queensland, I wish you and your loved ones a joyful, peaceful, and meaningful holiday season. May your celebrations be filled with love and laughter and may the spirit of giving bring you as much joy as it brings to those who receive it.

Together, let’s make this a Christmas to remember—for all the right reasons.