New hope in quest to solve mystery of MND hotspots

New hope may be on the horizon as motor neurone disease (MND) cases are now required to be reported to NSW Health. Mandatory reporting of MND cases to the health department is expected to provide a clearer picture of disease clusters across the state. This vital information could help researchers understand the causes of the disease and potentially lead to a cure.

Professor Dominic Rowe, who has been treating MND patients for years and established Macquarie University’s MND Research Centre in 2013, noted that MND cases have surged by 300% in Australia over the past 37 years. Rural areas have been disproportionately affected, with those living there facing 40% higher chances of dying from the condition.

Professor Rowe highlighted that, if there is no genetic cause, other factors such as occupation, recreation, or location may contribute to the disease. The state’s notifiable condition status for MND could offer much-needed data for researchers to analyze. MND hotspots, including regional centers like Griffith, Leeton, Wagga Wagga, and Narrandera, where rates of the degenerative illness are estimated to be five to seven times higher than the national average, are of particular interest.

Other areas of concern include Tamworth, Coffs Harbour, and Port Macquarie. While previous research has suggested a link between cyanobacteria (blue-green algae) blooms in waterways and MND, Professor Rowe emphasized the need for further investigation before drawing definitive conclusions. Tania Magochi, a resident of Griffith diagnosed with MND in 2011, grew up near Lake Wyangan, known for frequent cyanobacteria blooms.

Growing up near the lake, she and her family would often swim and play in the water. After learning about the potential connection between blue-green algae and MND, Magochi has taken steps to avoid the lake, now keeping her children away from it as well. Despite her family history of MND, Magochi hopes that the state’s new MND reporting requirements will provide answers and help researchers understand the environmental factors contributing to the disease.

Philip Orr from the Australian Rivers Institute at Griffith University, who has been studying blue-green algae for close to four decades, agreed that understanding the causes of algae blooms in areas like Griffith would be beneficial. Despite some concerns about water quality, Dr. Orr stated that Griffith's council is actively working to manage the lake's future in a sustainable manner.