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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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Over 150 occupational therapists, speech pathologists, physiotherapists, dietitians, social workers, COS, MND Clinic Coordinators, doctors and others from across NSW and beyond attended the 8th Biennial MND NSW Special Interest Group (SIG) workshop on 2 July 2019 at West Ryde. This year the MND SIG workshop was at capacity six weeks out from the event. It is a positive sign of the commitment clinicians and community care professionals who work with people living with MND have to improving their knowledge and clinical practice for the benefit of those living with the disease.

On 26 June the Financial Services Council (FSC) issued a press release announcing a moratorium on genetic testing and life insurance captured under FSC Standard No 11. The moratorium allows Australians to get up to $500,000 of life cover without disclosing an adverse genetic test result.

The ALS MND Patient Fellows Program helps people with ALS MND to participate in the largest annual symposium dedicated to ALS MND research.  The 2019 International Symposium on ALS MND will be held 4-6 December 2019 in Perth, Australia. The ALS MND Patient Fellows Program anticipate funding up to five Patient Fellowships for the Symposium and applications for a Fellowship close 19 August 2019. People diagnosed with ALS or MND may apply.

MND Australia, in partnership with MND WA, is proud to host the International ALS/MND meetings in Perth in 2019. This will be an opportunity for the Australian MND community to come together with their peers and leading international researchers from around the world to present and debate key innovations in their respective fields. All meetings will be held at the Perth Convention and Exhibition Centre.

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

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