In early March I headed to the University of Queensland to present as part of the MND@UQ meeting. It was such an amazing opportunity to speak to the group of around 50 junior to senior researchers from across Brisbane, many of whom rarely have any interaction with people actually living with MND! I was grateful to be able to share a bit of my story in hope of inspiring their research and giving them a real sense of purpose in their work.
Research is integral to gaining a greater understanding of the causes of MND, as well as to improve the diagnosis, care and quality of life of those affected. Unfortunately, the harsh reality is any breakthrough in research may not even benefit so many MND people in their lifetime.
For the past 5 years I have taken part in a study researching the effect of MND on metabolism. This has required me to undergo assessments at the Royal Brisbane Hospital twice a year. Along with providing a tone of blood samples, the research team used a Bod Pod device to measure my precise weight and volume to determine my body density and percentage body fat. I also underwent a muscle biopsy. This was done to help researchers grow motor neurons in the lab – fascinating stuff!
I am still so amazed to meet researchers who often have very little, if any, interaction with actual people living with MND. But I’m determined to change that!! This past year I have worked hard on my outreach to engage with audiences and share my journey of living with MND, from researchers in a lab, government policy makers, through to inspiring everyday people to live authentically. This important advocacy work is only possible thanks to amazing text to speech technology. Just like with my talk for MND@UQ, this technology gives me the ability to present in a human-like AI voice dubbed over my presentation. It has been truly wonderful to bring my passion for presenting back to life!
Since my presentation at the start of the month, things have snowballed. There are so many more opportunities for me in the coming months, so stay tuned! I am really looking forward to continuing my visits to MND labs everywhere and keep advocating for funding to find a cure, it will happen!