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MND NSW provides information, support and education for people living with motor neurone disease, their families, friends and carers in NSW, ACT, the Gold Coast and NT. We also provide information and education about motor neurone disease for health, community and residential care professionals.

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Do you live in the Riverina area in NSW? Macquarie University is looking into how environmental risk factors may play a part in causing MND. They are recruiting research participants who either have an MND diagnosis or have lived in the same household as someone with MND in the past 10 years. 

Videos from the 17 April 2019 Families for the Treatment of Hereditary MND (FaTHoM) meeting organised by the University of Oxford are now available free online. MND clinicians-researchers presented on topics such as genetics of MND, genetic testing and gene therapies. Below you can find out more about what was presented on the day

Australia's MND March of Faces Banners are a photographic display of people with motor neurone disease. The MND NSW March of Faces banners are displayed at various MND awareness raising and remembrance events throughout the year. Our MND March of Faces Banner 21 was displayed for the first time during MND Week 2019.

Results from the Phase 2 clinical trial of FORTITUDE-ALS have recently been made available. Here is the update from MND Australia. "The trial failed to meet either of its primary or secondary endpoints, with the trial finding the following:

  • no statistical significance demonstrated for change in slow vital capacity (SVC) from baseline following 12 weeks of dosing; and
  • dose-response analyses for the secondary endpoint failed to demonstrate statistical significance between reldesemtiv and the placebo arms.

A device the size of a small paperclip, created to give people with severe paralysis the ability to communicate again, has been approved for its first-in-human clinical trial - an early feasibility study (EFS) of the safety of the device - at The Royal Melbourne Hospital. Five patients, living within two hours of Melbourne, with a range of conditions including spinal cord injury, stroke, muscular dystrophy, or motor neurone disease, including amyotrophic lateral sclerosis (ALS) will be recruited during 2019 to trial the device.

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