How father's loss drove son to top MND advocacy job

Andrew Danson's father, Peter, died from motor neurone disease (MND) in 2020 at the age of 64. Upon his father's passing, Andrew joined the board of MND South Australia in hopes of assisting with fundraising efforts and attracting corporate sponsors. Initially, he did not envision himself in such a prominent role, stating, "I never at any stage thought that I would end up in this position."

Peter, a surveyor and former mayor of Mildura, was diagnosed with MND in 2018 after experiencing slurred speech, extreme fatigue, and weakness in one arm. The family had little understanding of the disease and initially believed Peter might overcome it. As the disease progressed, Peter's speech disappeared, and his mobility declined.

The family drafted a bucket list of memorable experiences before his passing, which included attending the AFL Grand Final at the MCG and watching an Australian training session in London. Despite the challenges, his family worked to maintain his independence for as long as possible. Andrew and his sister, Philippa, took turns traveling to Mildura to help with caregiving responsibilities and give their mother, Gayle, a break.

Peter passed away in January 2020, on Andrew's birthday, just days after collapsing in the hospital. Andrew acknowledges that stepping into the MND community was a part of his grieving process and says, "I've probably come to accept that it's OK to not be OK about it." Now, his goal is to improve the experience for families affected by MND, particularly those in regional areas where access to specialist care can be difficult.

He aims to create a framework of care that supports the entire community. However, Andrew faces financial challenges, as MND organisations compete for a shrinking pool of discretionary funding. Increased awareness of MND, driven by the work of late Australian rules footballer Neale Daniher, who died from the disease, and South Sydney NRL player Jai Arrow, has raised funds for research and care.

The Australian first national MND Conference in Adelaide aims to bring together various stakeholders to address these issues. Andrew emphasizes the importance of sustainable funding and dreams of being redundant from his position, which would signify the availability of a cure.