MND Australia
MND Info Line 1800 777 175. 9am to 4.30pm Monday to Friday.

Information resources

  • Factsheets
  • Publications
  • Websites
  • Aboriginal & Torres Strait Islander resources
  • Videos, training & webinars

Factsheets

Factsheet about Kennedy's Disease or Spinal and Bulbar Muscular Atrophy (SBMA)
Factsheet on the benefits of planning ahead for end of life, including advance care directives and making a Will
Factsheet on a medication that extends the life of a person with MND by an average of 6 to 19 months.
Factsheet covering the physical, emotional and cognitive-behavioural aspects of sexuality and intimacy while living with MND

Publications

Printable A4 poster that outlines some key aspects of providing health and personal care for a person with MND. Suitable for both care at home and residential settings
Booklet that delivers more detailed information on MND, following on from the Some Facts about MND brochure
A quick reference tool for paramedics on providing optimal care and support for people with MND. Endorsed by the Australasian College of Paramedicine.
Publication launched in 2017 to celebrate MND Research Australia's investment of $25 million in Australian-based MND research.

Websites

The leading ALS organisation in the United States. They strive to discover treatments for ALS, and to advocate for and empower people affected by ALS to live their lives to the fullest.
Website that reviews alternative and off label treatments, with the goal of helping people with ALS/MND make more informed decisions about them
Website designed to assist people who are caring for someone who is at the end of life.
Website providing practical information and advice for carers and connection with services and support
Website providing evidence-based information about palliative care
Information and services to help people with disability, their family, friends and carers, to find the support they need
FightMND exists to champion hope by funding MND research to find effective treatments and a cure.
Education and training for frontline staff delivering culturally responsive palliative care to Aboriginal and Torres Strait Islander peoples
A US-based organisation that provides support for children who have a family member with MND, with resources available to Australian residents
The MND and Me Foundation supports people and their families living with MND in Queensland and funds research into treatments for MND.
Provides information and support for people living with MND in England, Wales & Northern Ireland.
Website from the MND Association UK with activities and resources that support children aged 4–10 years to understand the impact of MND on their family
Gateway to accessing government-funded services for people diagnosed with MND aged 65+
Tool to help people learn more and make decisions around NIV planning. Partly developed with funding from MND Research Australia

Aboriginal & Torres Strait Islander resources

MND Explained (20MB)
Short booklet describing MND and where to find support, developed by MND South Australia

Videos, training and webinars

A self-paced, e-learning program developed by MND NSW, which provides health and community care professionals with a basic understanding of the impact of living with MND
Video of Kirsten Harley's opening address at the 10th National MND Australia Conference 2021, where she shares her MND journey.