This research update is produced by the MND Research Institute of Australia - the research arm of MND Australia. Read the latest MND research news.
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.
What a great morning in Port Macquarie for our Walk to d’feet MND. Mother nature was testing us with strong winds and a very distinct chill in the air but over 200 hardy souls turned up to support people living with a
Motor Neurone Disease. Thank you to everyone who supported our Walk, to date over $21,000 has been raised. What a great effort Port Macquarie!
The Australian Government is developing a Charter of Aged Care rights and you can comment on the draft Charter before 10 October 2018. The Charter will provide protection for the rights of aged care consumers. Make sure the MND voice is heard so people with MND aged 65 years and over get the care and support they need and deserve. Read more and provide your comments here https://consultations.health.gov.au/aged-care-policy-and-regulation/the-australian-charter-of-aged-care-rights/
About one out of every ten people with MND will receive a diagnosis of ‘motor neurone disease with frontotemporal dementia' or MND/FTD. Often the symptoms of dementia precede the motor symptoms, sometimes by a number of years. The 11th International Conference on Frontotemporal Dementias (ICFTD) is on in Sydney during November and running concurrently with the ICFTD 2018 program will be a specialist day on Tuesday 13 November focused on issues and challenges for carers.
The 9th National MND Australia Conference, hosted by MND South Australia, was held on Friday 31 August. The conference MND Care: Informing, Influencing, Innovating attracted over 200 delegates with diverse health, allied health and community support backgrounds from around Australia and New Zealand.
On 21 August ABC TV aired 'The Village' featuring former Foreign Correspondent reporter Sean Dorney who has MND, as he visited his beloved Papua New Guinea. You can catch up on this episode on ABC iView here and read the backstory from Cameraman, Craig Berkman, here. Many families living with MND will be able to find a lot in common, "Sean and Pauline take a fairly practical and good-humoured approach to dealing with this increasingly frustrating condition, so you might wonder where the emotion comes from for the rest of us since we're not the ones dealing with it...