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

Kennedy's Disease
Factsheet about Kennedy's Disease or Spinal and Bulbar Muscular Atrophy (SBMA)
Planning ahead
Factsheet on the benefits of planning ahead for end of life, including advance care directives and making a Will
Riluzole (EB4)
Factsheet on a medication that extends the life of a person with MND by an average of 6 to 19 months.
Sexuality and intimacy in MND
Factsheet covering the physical, emotional and cognitive-behavioural aspects of sexuality and intimacy while living with MND
Travelling with MND
Factsheet with resources and information on travelling both locally and internationally with MND. Produced by MND Victoria.

Publications

Health and personal care poster
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
More Facts about MND
Booklet that delivers more detailed information on MND, following on from the Some Facts about MND brochure
Paramedics MND tool (292KB)
A quick reference tool for paramedics on providing optimal care and support for people with MND. Endorsed by the Australasian College of Paramedicine.
What is MND?
Two page A4 handout giving an introductory overview of motor neurone disease and care options. Replaces the Some Facts about MND publication.
$25 million | 25 milestones (3.1MB)
Publication launched in 2017 to celebrate MND Research Australia's investment of $25 million in Australian-based MND research.

Websites

ALS Association
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.
ALSUntangled
Website that reviews alternative and off label treatments, with the goal of helping people with ALS/MND make more informed decisions about them
CarerHelp
Website designed to assist people who are caring for someone who is at the end of life.
Carers Gateway
Website providing practical information and advice for carers and connection with services and support
CareSearch
Website providing evidence-based information about palliative care
Disability Gateway
Information and services to help people with disability, their family, friends and carers, to find the support they need
FightMND
FightMND exists to champion hope by funding MND research to find effective treatments and a cure.
Gwandalan
Education and training for frontline staff delivering culturally responsive palliative care to Aboriginal and Torres Strait Islander peoples
Hope Loves Company
A US-based organisation that provides support for children who have a family member with MND, with resources available to Australian residents
MND & Me Foundation
The MND and Me Foundation supports people and their families living with MND in Queensland and funds research into treatments for MND.
MND Association (UK)
Provides information and support for people living with MND in England, Wales & Northern Ireland.
MND Buddies
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
My Aged Care
Gateway to accessing government-funded services for people diagnosed with MND aged 65+
My ALS decision tool
Tool to help people learn more and make decisions around NIV planning. Partly developed with funding from MND Research Australia

Videos

Genetics and MND
Video explaining how an MND gene can run in families, with 10% of people of people with MND having 'familial MND'.
Living with MND
Short video about motor neurone disease and how MND Australia and the state associations support people living with the disease.
MND Research Australia
Short video about MND Australia's research arm, MND Research Australia, and their vision to develop treatments, improve care and find a cure for MND.
Travelling with MND
Experiences, advice & tips on travelling with MND, from people living with MND.
Treatment for MND
Short video outlining several treatment strategies that can help both extend and improve quality of life.

Aboriginal & Torres Strait Islander resources

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

Training and webinars

MND Aware training modules
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
MND stories and strategies
Video of Kirsten Harley's opening address at the 10th National MND Australia Conference 2021, where she shares her MND journey.