Professor Dominic Rowe, the Macquarie University Motor Neuron Disease Research Centre, and the MQ Health MND Clinic have featured in an emotive episode of the ABC’s Australian Story.
The program focused on the journey of one of Professor Rowe’s patients, 1980s television personality, Fiona MacDonald.
Ms MacDonald, who hosted the family game show It’s a Knock Out! and popular children’s show Wombat, was diagnosed with MND in 2021.
MND is a neurodegenerative disease that results in progressive loss of motor control. There is no cure, and most people die within two years of diagnosis.
Wanting to make the most of the time she has left, but also give something back, Ms MacDonald embarked on a 15,000-kilometre road trip around Australia in June.
As well as increasing awareness about this cruel disease, she hoped her ‘big lap’ would raise $100,000 for the MND Research Centre’s work. At the time of publication, she had surpassed that goal, raising more than $127,000.
Professor Rowe was interviewed extensively for the show, and spent a weekend visiting the Riverina so he could be interviewed with another of his patients, citrus grower Rocky Pirrotinna.
The Riverina has the sad distinction of being a hotspot for MND, with its residents being diagnosed with the disease at five times the national rate.
However, with no official figures, clusters can be difficult to recognise, and this is hampering research. Professor Rowe has been lobbying for some time to have MND declared a notifiable disease, requiring doctors to notify the government of all new cases.
While about 10 per cent of cases are inherited, the rest are sporadic. The causes of these sporadic cases have not yet been confirmed, but researchers around the world are investigating possible environmental factors.
One of those possible links is outbreaks of blue-green algae, which often occur in waterways around agricultural areas due to fertiliser run-off. Professor Rowe and his team are working to secure funding to delve into the blue‑green algae connection.
The MND Research Centre is also hoping to raise funds to support the next phase of the clinical trial of a promising potential treatment for MND, 3K3A‑APC.
Learn more about the MND Research Centre’s work.
Watch the episode below.
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ALS is a cruel disease. My mum is 83 and had great difficulty speaking and swallowing much of anything. Food was getting trapped in her throat and blocking her air way was happening more often. she battled for each breath. The riluzole did very little to help her. The medical team did even less. Her decline was rapid and devastating. The psychological support from the medical centre was non-existent and if it were not for the sensitive care and attention of our primary physician, there she would have died. There has been little if any progress in finding a cure or reliable treatment. Acupuncture eased her anxiety a bit. this year our primary physician started her on Natural Herbs Centre ALS/MND Ayurvedic treatment, 6 months into treatment she improved dramatically. It has been a complete turnaround with her speech, she no longer needs the feeding tube to feed, the treatment is a miracle. She recovered significantly!