{"id":764097,"date":"2026-06-27T17:12:19","date_gmt":"2026-06-27T17:12:19","guid":{"rendered":"https:\/\/www.newsbeep.com\/au\/764097\/"},"modified":"2026-06-27T17:12:19","modified_gmt":"2026-06-27T17:12:19","slug":"motor-neurone-disease-registry-nsw-to-become-first-state-to-require-mandatory-reporting-of-mnd-cases-to-help-researchers-find-a-cure-3","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/au\/764097\/","title":{"rendered":"Motor neurone disease registry: NSW to become first state to require mandatory reporting of MND cases to help researchers find a cure"},"content":{"rendered":"

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When Keri Balding was told that her younger sister Jennifer had been diagnosed with sporadic motor neurone disease (MND) in May last year, she dropped everything, including her work, and raced back from Europe to Sydney to care for her.<\/p>\n

She can still recall word-for-word the text message Jennifer sent her: \u201cThank you for coming home. I\u2019m OK at the moment, but I don\u2019t know what\u2019s going to happen.\u201d<\/p>\n

\u201cShe signed it off, your baby sister. It just actually brought me to tears,\u201d Balding said.<\/p>\n

\"KeriKeri Balding, whose sister Jennifer died by voluntary assisted dying after being diagnosed with MND. Janie Barrett<\/p>\n

\u201cEvery day, we had a different normal. What people don\u2019t realise is how much responsibility family members take on for this.\u201d<\/p>\n

Jennifer died by voluntary assisted dying on June 2, a little over a year after her diagnosis. She wanted to be able to give her full consent to doctors before the disease fully stripped her of the ability to nod and speak.<\/p>\n

Because of the rapid progression of MND, patients can lose control over core motor functions such as speech in a matter of months. But Jennifer\u2019s deterioration happened much faster than her, or her family, had expected.<\/p>\n

\u201cJen lived on her own terms, and she was going to die on her own terms \u2026 She wanted to make sure that she could still have the capacity to give her consent, of course, because the disease, you know, it\u2019s a flesh prison \u2013 you\u2019re inside your own body, and you\u2019re trapped in there.\u201d<\/p>\n

In a world-first, doctors in NSW will be required to report diagnoses of MND to a state-based registry in a change that will be instrumental in helping researchers understand what causes the incurable condition.<\/p>\n

Experts say the statewide registry is a major step forward in the fight against the rare and progressive disease that the late AFL great Neale Daniher described as \u201cThe Beast\u201d.<\/p>\n

The same condition forced the retirement<\/a> of former South Sydney Rabbitohs player Jai Arrow in May. Arrow backed the decision by the NSW government this week, and called on other states to follow suit.<\/p>\n

While Australia has a national MND registry, it operates on a voluntary basis and therefore cannot be used to collect reliable data on the disease.<\/p>\n

Health Minister Ryan Park told NSW parliament on Wednesday that the registry \u2013 which will record information such as where patients live, and their occupations \u2013 will help to paint a clearer picture of MND and whether it is caused by genetics or the environment.<\/p>\n

\"NSWNSW Health Minister Ryan Park hopes the new registry will help to shed new light on MND. Louise Kennerley<\/p>\n

Calls to investigate whether environmental factors contribute to MND have intensified since reports of \u201cclusters\u201d of the disease<\/a> occurring in areas near outbreaks of blue-green algae. Towns with a higher exposure to certain agricultural chemicals also experience a disproportionate incidence of the disease.<\/p>\n

Communities near Lake Illawarra and along the NSW Riverina have recorded rates of MND at near seven times the national incidence.<\/p>\n

Related Article\"Peter<\/a><\/p>\n

Macquarie University head of neurology Professor Dominic Rowe has spent decades doing MND fieldwork in rural and regional NSW communities.<\/p>\n

He said that while researchers still know \u201cremarkably little\u201d about what causes the condition, they strongly suspect sporadic MND is caused by a combination of environmental triggers.<\/p>\n

\u201cSporadic motor neurone disease is an environmental disease,\u201d Rowe said. <\/p>\n

According to MND Australia, the vast majority of motor neurone disease \u2013 near 90 per cent \u2013 is sporadic, meaning it develops without a family history of the condition.<\/p>\n

\u201cWe must understand the cause of this disease, and the only way to do that is to systematically identify who has the disease, and then with meticulous research, to understand the cause of this disease,\u201d he said.<\/p>\n

Rowe has been lobbying the government to make MND a notifiable condition for years, and said the change was extraordinary.<\/p>\n

\u201cThis [change] will enable systematic research into the environmental cause of motor neurone disease. If we don\u2019t understand the cause, we can\u2019t understand the mechanism. If we don\u2019t understand the mechanism, we can\u2019t slow and stop the disease.<\/p>\n

\u201cThis year in Australia, 800 people will be killed by motor neurone disease. That\u2019s two-thirds of the national road toll. When someone dies on the roads, that fatality is studied to the nth degree, and we need to apply the same assiduous research into MND.\u201d<\/p>\n

Balding welcomed the decision by the NSW government to make MND a notifiable condition.<\/p>\n

\"KeriKeri Balding (left) with her sister Jennifer Balding in January. Jennifer died by voluntary assisted dying after being diagnosed with MND. Keri Balding<\/p>\n

\u201cIt\u2019s a step in the right direction to finding a cure. If you can find the cause, you can find the cure.<\/p>\n

\u201cWe are traumatised by this,\u201d she said. \u201cIt\u2019s a traumatic experience.\u201d<\/p>\n

Jennifer leaves behind two children \u2013 30-year-old Sophie, a lawyer, and 26-year-old Tim, an actor. The family will hold an end-of-life ceremony in July.<\/p>\n

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\"EmilyEmily Kaine<\/a> is a national news blogger at The Sydney Morning Herald.Connect via email<\/a>.From our partners<\/p>\n","protected":false},"excerpt":{"rendered":"Save You have reached your maximum number of saved items. Remove items from your saved list to add…\n","protected":false},"author":2,"featured_media":763533,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2],"tags":[43,44,41,39,42,40],"class_list":["post-764097","post","type-post","status-publish","format-standard","has-post-thumbnail","category-headlines","tag-headlines","tag-news","tag-top-news","tag-top-stories","tag-topnews","tag-topstories"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts\/764097","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/comments?post=764097"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts\/764097\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media\/763533"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media?parent=764097"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/categories?post=764097"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/tags?post=764097"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}