Support & Information

Information resources

Understanding MND booklet

Most people reading this booklet will have experienced a recent diagnosis of motor neurone disease (MND) for themselves, a relative or friend. We understand the challenge and confusion experienced at this time and we hope this booklet answers some initial questions. The information in this booklet is general and details will not apply to everyone.

'What did you learn today?'

"What Did You Learn Today" is a well written children's book to help explain MND to a child. We now have copies of this book available, free of charge to anyone who needs them.

Please request one from your Support Advisor or by emailing us at .

Best Practice Guidelines

Developed over a number of years by a working group of New Zealand MND clinicians, this document represents what specialists in MND care agree should be the standard of care for any New Zealander diagnosed with MND.

Read more about the development of the guidelines, here.

End of life planning

A diagnosis of motor neurone disease can be devastating and it may take some time to adjust and take in the news that you have a life limiting condition. At some point you will want to plan ahead and consider how you would like to be cared for as you approach the end of your life. This guide has been developed by MND Australia, and explains treatments, who to talk with about sensitive topics, creating a legacy, how to address your wishes and ways of getting help and support.

MND medical alert cards

Medical alert cards aid paramedics and hospital staff, should someone living with MND require urgent care. Download the wallet sized card and the A5 fridge card, print out and fill in your details. Printed versions of the medical alert cards can be requested from a Support Advisor.

Helpful websites

There are many websites that have useful information for people with MND and their carers. We have provided links below to some useful third-party websites containing information for people with MND and MND carers.

The inclusion of these links does not imply our endorsement of the sites (including the views expressed, any materials, products or services offered on such sites). We do not control such third-party websites, and we are not responsible for the content on such linked websites.

  • ALS Untangled helps people with MND/ALS and health professionals review alternative, complementary and off-label treatments.
  • Seniorline provides information on how to get help to stay at home and relief care options for caregivers.
  • David Savage: Diagnosis gives strategies for people with a life-threatening illness. These ideas may help you find mental strength while you navigate the challenges of life after your MND diagnosis.
  • Align, Lengthen & Strengthen Your Resilience While Living with ALS is a free e-book or PDF by Dagmar Munn, a person with MND, containing practical advice for creating a resilient life while living with MND.

Book library

The following books can be downloaded, but they cannot be printed at home.

We also have an extensive library of MND-related books, covering a wide variety of topics. Please get in touch with your support advisor for a list of books available.

MND NZ Newsletters

Motor Neurone Disease NZ publishes twice-yearly newsletters covering research updates, community stories, and more.

Visit the newsletters page

Other MND Associations

We work collaboratively with global associations, together working to support people affected by MND today, and accelerate the pace of research for a future free from MND.