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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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On Sunday 3 March 2019 Channel 10 The Project spoke with sisters Kaitlyn and Jessica Ellis about the impact of having an MND related genetic mutation, which increases the risk of later developing MND. They also talked about MND Genies, the MND NSW closed unlisted Facebook group where people can connect and share their experiences. You can watch online here (the interview starts at around 15mins into the program) until 3 June 2019. Find out more about MND Genies here https://www.mndnsw.asn.au/what-we-do/groups/1299-mnd-genies.html

For many people living with MND, appropriate aged care and support which can and should be delivered within a person’s own home, is completely unavailable to them. Many more are struggling to even achieve a fundamental level of support. This is unacceptable. The current Royal Commission into Aged Care in Australia has primarily focussed on the experience of older Australians in residential settings. This only represents part of the substandard care older people are experiencing through our aged care system. Depriving someone of the right to remain living in their own home, simply because of an unavailability of in home care packages is also substandard care. Now is the time to add our voices to the discussion and provide a very clear message to the investigators and to the decision makers that people living with MND want, need and expect to access their care, their way in their own homes.You can make a submission or have your voice heard.

Australian media has recently reported on a poster presented at the 29th International Symposium on ALS/MND held in Glasgow in December that reported outcomes of a phase 1 Clinical Trial conducted in Australia. The phase 1 trial was designed to test the safety and dosage of the compound CuATSM and research funds donated to MND NSW have been part of the $1.2million invested in trials of copper ATSM through the MND Research Institute of Australia.

MND Connect brought together the community, researchers and clinicians in an interactive forum to discuss MND research. The presentations can be viewed by following the link below. The 4th annual MND Connect meeting was held in Melbourne on 10 November and showcased the remarkable MND research currently being undertaken in Australia. People living with MND were invited to attend, along with friends, family, researchers and health professionals from the broader MND community. Ron Grima, who is living with MND, attended the conference with his wife, Debbie. Ron provided MND Australia with the following report.

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Leaving MND NSW a gift in your Will can make all the difference to people living with motor neurone disease.

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