A Friend’s Place: helping families navigate the heartache of MND 

A motor neurone disease (MND) diagnosis sends shockwaves through every corner of a person’s life. It doesn’t just affect the person receiving the news. It creates a ripple that spreads out, touching everyone who loves them. For families, the impact can be especially overwhelming. Trying to make sense of a loved one’s diagnosis, whilst also supporting children through the emotional turmoil, is an incredibly difficult challenge. 

A Friend’s Place is a Care initiative that received FightMND funding in 2024. The program is a collaboration between the National Centre for Childhood Grief (NCCG) and Australia’s MND associations. It offers specialist care packages designed specifically for families with children aged 3 to 17, helping them navigate the emotional complexities of living with a close family member who has MND. 

FightMND’s support of this program is a continuation of its contribution to the initiative’s 2023 pilot program. The 2024 investment will see the program expanded to 35 families across Australia. These families will receive individual counselling sessions and group family counselling sessions, either in-person or online. Support for the children’s schools and other important care resources are also included in the program. 

For Chris Waugh, Head of Development at NCCG, the program supports families impacted by MND to understand and cope with grief and loss. 

“Families where a loved one has been diagnosed with a terminal illness, like MND, face a lot of challenges. Their loved one is still alive, but they know they have a terminal condition. There is no hope for recovery,” said Chris. 

“For children, they need to hear the truth in an age-appropriate way and have a choice to be involved in what is happening. The NCCG’s specialist staff will help both children and adults to develop their coping skills and other personal strengths to build long-term resilience. This resilience, in turn, helps children and adults to minimise future mental health challenges, stay connected with their education and community and lead their own best lives,” he said. 

This year’s investment includes providing targeted training for frontline care staff from each Australian MND association. This training will enhance their ability to support families through their grief and bereavement. It will ensure families receive the guidance and resources they need during this challenging time. 

Andrew and Susan’s story 

Andrew was a family man who loved spending time holidaying with his wife, Susan, and children John, Joy, Thomas and Lucy. His life changed when he received the devastating diagnosis. He had MND.  

Andrew and Susan knew it was important to include the kids in their discussions about what his diagnosis meant. To let them ask questions and prepare them for the journey ahead.  

Shortly after receiving his diagnosis, Andrew and Susan were connected with the NCCG for specialist care. From the start, the family were provided with the support they needed, with grief counselling offered to the whole family.  

Andrew was only 58 when he died in 2023 , leaving behind his wife Susan and four kids. From left to right: John, Susan, Joy, Andrew, Thomas and Lucy.

For Andrew’s eldest daughter, Joy, writing letters to her dad helped her navigate her grief. They helped her work through her feelings and what was happening to her and her family. While these letters were never sent, they were read at Andrew’s funeral as a powerful eulogy to her dad.  

Accessing A Friend’s Place gave Andrew, Susan and their family the ability to have meaningful conversations with one another. Conversations reflecting on the past. Conversations about what was happening. Conversations about what laid ahead. This helped them build resilience and navigate their grief together. 

Investing in Care initiatives to support those affected by MND 

A Friends Place is just one of 10 Care initiatives receiving funding from FightMND in 2024. 

Thanks to your generosity, we can invest in vital programs and initiatives delivered by Australia’s MND associations and other organisations working with those battling the Beast. This investment ensures that these groups can continue to help those living with MND and their families.  

Our investment into Care initiatives focuses on three key priorities that we developed in consultation with the MND community.  

• Evidence: funding care-focused research to inform best practices for supporting people with MND, their carers and families.  
• Standards: Investing in the creation of national standards and guidelines for MND care.  
• Support: Providing targeting support through organisations delivering MND care and services. 

Our Care impact page provides more information about FightMND’s investment in this area. You can also learn more about the amazing initiatives were supporting this year in our 2024 Cure and Care Investment Booklet.