General information about MND

This is a comprehensive 14 page A4 reference guide with online links to information, services and resources that may be of interest to people living with MND in NSW, the ACT and NT.

2 page leaflet providing brief answers to questions people usually ask about motor neurone disease.

• free online
• hardcopy available - free for members and others

Translated information sheets are also available for download in the following languages: Arabic  Chinese  Croatian  Greek  Italian  Korean  Polish  Serbian  Spanish  Thai  Turkish  Vietnamese

(c) MND Australia published September 2018

20 page booklet describing motor neurone disease, management of symptoms and how to access services.

• free online
• hardcopy available - free for members and others

(c) MND Australia published March 2020

Information pack of six booklets (of 8 to 20 pages each) for parents making the difficult journey with motor neurone disease. Includes one booklet for parents with suggestions and tips, and five other booklets.

• free online
• hardcopy available - free for members, families and carers in NSW,ACT andNT.

Contents include:

(c) MND Vic and MND NSW published June 2008

MND NSW has developed a new 18-page booklet for children aged 5 - 13 years who have someone in their lives living with MND.

About 10% of people diagnosed with MND have a ‘familial’ form of the condition; that is, there is or has been more than one affected person in a family. The remaining 90% of people with MND are the only affected person in their family and are said to have ‘sporadic’ MND. Most people with MND have the sporadic form and so it is not a genetic or inherited form of the condition and so will not be passed on in families.

Watch the Opening Address given by Dr Kirsten Harley and her daughter Kimi at the MND Australia Conference 2021. Dr Kirsten Harley is an Hon Lecturer in the Faculty of Medicine and Health at the University of Sydney and a board member of MND NSW. Kirsten was diagnosed with MND in 2013 and in this address she and her 15 year old daughter, Kimi Cabrera, share their strategies and stories for managing MND. Opening Address

You can also follow Kirsten's updates and insights on her personal blog page here: Kirsten Harley – Living with MND (home.blog)

There is ongoing interest in alternative, off label and unproven treatments within the MND community globally, which is understandable when conventional medicine cannot provide effective therapies or a cure.

It can be difficult for people living with MND and their families to endure the wait for the development of an effective treatment and cure. MND Australia acknowledges the urgency to advance research to better understand MND and the desperate need for an effective treatment.

Ask the Experts is a one-day forum about motor neurone disease for people living with the disease, their families and friends. Experts in the field give presentations on a variety of topics relating to MND and these presentations are recorded and made available to watch on our YouTube channel. 

Topics include: MND research, clinical trials, advance care planning, stem cell science, maintaining nutrition, speech and swallow and much more. Motor Neurone Disease NSW - YouTube

60 minute audio recorded at MND NSW Ask the Experts 2010

Presented by Professor Dominic Rowe, Macquarie MND Neurology Service. Professor Rowe reviews what is known about motor neurone disease (MND) and provides strategies that can be used when you are trying to separate MND facts from MND fallacies.

• free online

(c) MND NSW published August 2010