Introductory information about motor neurone disease.

Information pack of six booklets (of 8 to 20 pages each) for parents making the difficult journey with motor neurone disease. Talking with young people about MNDIncludes 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

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 (

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


Subscribe to news and updates

See us on YouTube

Couldn't get to Ask the Experts or the SIG workshop?

Catch up at the MND NSW YouTube Channel.

yt logo rgb light