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

Information resources

On this page you will find a range of information resources for people with or affected by motor neurone disease.

Our resources are available in a variety of formats, including downloadable fact sheets, guides and booklets, animations and videos. There are resources for health professionals, carers, Aboriginal and Torres Strait Island communities. There is also a range of links to other useful websites.

For additional guidance and information, or to order a print resource, contact the MND Info Line on 1800 777 175.

These introductory resources are a good place to start if you or someone close to you has been recently diagnosed with MND.

MND background information sheet
Information and statistics about MND in Australia and the role of the Australian MND Associations

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.

MND evidence-based treatments and support: an overview
This fact sheet gives an overview of treatments and support for MND

A range of guides and booklets giving information about MND, including facts and statistics, treatment, symptom management and support.

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.

More About MND
Guide designed to give people affected by MND a better understanding of the disease, including treatment and symptom management. Follows on from What is MND? Print copies available from State MND Associations.

End of Life Care: A guide for people living with MND
User friendly guide to assist with talking about and planning for the end of life. Print copies available from the State MND Associations.

Talking with your GP or neurologist about MND and mental health
Short guide for people with MND to assist with talking about mental health with their GP or neurologist.

Our evidence-based fact sheets provide a range of information on specific aspects of MND. We have listed these fact sheets alphabetically A to Z to help you find the right type of information to meet your needs.

Breathing & MND: an introduction (EB5)
Fact sheet with an overview of the effect of MND on breathing and the respiratory system

Breathing & MND: medications and non-invasive ventilation (EB7)
Fact sheet on practical techniques to help breathing

Breathing & MND: what you can do (EB6)
Fact sheet explaining the effects on the respiratory system for someone living with MND

Cognitive and behaviour change in MND
Fact sheet on potential cognitive changes people living with MND may experience

Considering gastrostomy: PEG & RIG (EB8)
Fact sheet overview of gastrostomy options for people with MND

Familial MND and genetic testing
Fact sheet covering inherited MND genetic mutations and genetic testing

Kennedy's Disease
Fact sheet about Kennedy's Disease or Spinal and Bulbar Muscular Atrophy (SBMA)

Living with MND during the COVID-19 pandemic
Fact sheet covering information about COVID-19 in Australia relevant to people living with MND

Maintaining weight for health with MND
Fact sheet outlining techniques to manage weight and healthy nutrition

MND evidence-based treatments and support: an overview (EB1)
Fact sheet on treatments and interventions to live better and independently with MND for longer

Multidisciplinary care (EB2)
Fact sheet on how a multidisciplinary healthcare team supports people to live well with MND

Pain management with MND
Techniques and resources to help manage potential pain associated with MND symptoms

Physical activity and MND
Fact sheet on how to approach physical activity while living with MND

Planning ahead
Fact sheet on the benefits of planning ahead for end of life, including advance care directives and making a will

Riluzole (EB4)
Fact sheet 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
Fact sheet covering the physical, emotional and cognitive-behavioural aspects of sexuality and intimacy while living with MND

Sleep and MND
Explainer article about sleep and MND, including tips about how to manage sleep and support for carers

Travelling with MND
Fact sheet with resources and information on travelling both locally and internationally with MND. Produced by MND Victoria

If you have MND, the following resources can help you make decisions about therapies, treatments or care

Guides

End of Life Care: A guide for people living with MND
User friendly guide to assist with talking about and planning for the end of life. Print copies available from the State MND Associations

Talking with your GP or neurologist about MND and mental health
Short guide on how someone with MND can approach conversations about mental health with their GP or neurologist

Fact sheets

Breathing & MND: medications and non-invasive ventilation (EB7)
Fact sheet on practical techniques to help breathing

Considering gastrostomy: PEG & RIG (EB8)
Fact sheet overview of gastrostomy options for people with MND

Familial MND and genetic testing
Fact sheet covering inherited MND genetic mutations and genetic testing

Pain management with MND
Techniques and resources to help manage potential pain associated with MND symptoms

MND evidence-based treatments and support: an overview (EB1)
Fact sheet on treatments and interventions to live better and independently with MND for longer

Planning ahead
Fact sheet on the benefits of planning ahead for end of life, including advance care directives and making a will

Animations

Maintaining independence at home with MND
Short video outlining home modifications that can help people with MND live safely and independently in their home

Non-invasive ventilation (NIV) and MND
Short video explaining the benefits of using non-invasive ventilation (NIV) with MND

Websites

ALSUntangled
Website that reviews alternative and off label treatments, with the goal of helping people with ALS/MND make more informed decisions about them

My ALS decision tool
Tool to help people learn more and make decisions around NIV planning. Partly developed with funding from MND Research Australia

A range of animations and videos give brief overviews to help explain aspects of MND like genetics and treatment options, as well as information about services and support.

Diagnosing motor neurone disease (MND)
This short video sheds light on the process for diagnosing MND, including the time it takes, the people involved, and where you can go for support.

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.

Maintaining independence at home with MND
Short video outlining home modifications that can help people with MND live safely and independently in their home.

MND Associations in Australia
Video about the state MND associations and the work they do to support and care for people living with MND.

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.

Non-invasive ventilation (NIV) and MND
Short video explaining the benefits of using non-invasive ventilation (NIV) with MND.

Getting out and about in the community with MND
People living with MND share their experiences on ways to continue to access and participate in the community.

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.

These resources provide information about services provided through MND Associations and other organisations, health professionals and government-funded support.

Guides and booklets

MND background information sheet
Information and statistics about MND in Australia and the role of the Australian MND Associations

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.

More About MND
Guide designed to give people affected by MND a better understanding of the disease, including treatment and symptom management.  Follows on from What is MND? Print copies available from State MND Associations.

End of Life Care: A guide for people living with MND
User friendly guide to assist with talking about and planning for the end of life. Print copies available from the State MND Associations.

Fact sheets

MND evidence-based treatments and support: an overview (EB1)
Fact sheet on treatments and interventions to live better and independently with MND for longer

Multidisciplinary care (EB2)
Fact sheet on how a multidisciplinary healthcare team supports people to live well with MND

Animations and videos

Living with MND
Short video about motor neurone disease and how MND Australia and the state associations support people living with the disease.

MND Associations in Australia
Video about the state MND associations and the work they do to support and care for people living with MND.

Websites

Assistive Technology Australia
Information, education and advisory centre for Assistive Technology (AT)

Disability Gateway
Information and services to help people with disability, their family, friends and carers, to find the support they need

My Aged Care
Gateway to accessing government-funded services for people diagnosed with MND aged 65+

National Disability Insurance Scheme (NDIS)
Information on getting started and the planning process for eligible NDIS participants

National Palliative Care Service Directory
Online tool to help you find local palliative care services

We have a number of guides and videos about MND produced with and for Aboriginal and Torres Strait Islander people.

Guides

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

Videos

Motor neurone disease: What is it?
Video featuring an Indigenous person's MND palliative care journey

Palliative Care – Caring for our mob at the end of their life
A short video about palliative care among the Aboriginal and Torres Strait Islander community

Palliative care – supporting patients & family
Video for Aboriginal and Torres Strait Islander health professionals on how best to support a palliative patient and their family

Websites

Gwandalan
Education and training for frontline staff delivering culturally responsive palliative care to Aboriginal and Torres Strait Islander peoples

These resources may assist family and friends and other support people who are caring for a person with MND.

Animations and videos

Palliative Care – Caring for our mob at the end of their life
A short video about palliative care among the Aboriginal and Torres Strait Islander community

Palliative care – supporting patients & family
Video for Aboriginal and Torres Strait Islander health professionals on how best to support a palliative patient and their family

Other websites

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.

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.

Support for children and young adults impacted by MND includes resources and information available through health professionals and MND organisations, as well as online information.

Guides and booklets

Me, my family and MND
A guide for young people to understand MND produced by MND NSW.

Talking about MND for 8 to 12 year olds
Booklet for children aged 8 to 12 years to learn about how MND may affect a family member or friend

Talking about MND for teens
Booklet for teens to read about living with a parent or family member with MND

Talking about MND for young friends
Booklet for young people who have a friend whose parent lives with MND

Talking with young people about MND: A guide for parents
A guide for parents to support them in conversations with their children about MND

Talking with young people about MND for schools
A guide for schools about MND where a student currently has someone living with MND in the family

Websites

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 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.

The resources below are designed to assist health professionals better understand MND to support people who are living with the disease.

Guides

Aspects of Care: for home and community care teams
A booklet for home and community care providers about caring for people with MND in the home setting

Aspects of Care: for staff of residential aged care facilities
A booklet for aged care staff who care for people living with MND in residential aged care settings.

Aspects of Care: for the primary health care team
A detailed clinical guide for GPs and the primary healthcare team who support people living with MND and their families.

Tools and posters

General Practitioner diagnostic tool for MND
A diagnostic tool for GPs that highlights MND 'red flags' and supporting factors that point towards a diagnosis of MND.

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

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.

Webinars and training

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.

MND Victoria Health Professionals webinar series
Series of webinars with expert presenters about MND care. Suitable for health professionals and service providers.

Websites

Gwandalan
Education and training for frontline staff delivering culturally responsive palliative care to Aboriginal and Torres Strait Islander peoples.

We’ve included some links below to third party websites that have useful information for people with MND, their family and friends.

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

Assistive Techology Australia
Information, education and advisory centre for Assistive Technology (AT)

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

HealthDirect service finder
Online tool to help you find local healthcare professionals

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

International Alliance of ALS/MND Associations
A global network of ALS/MND associations informed by PALS/CALS, focussed on building community, capacity and capability

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

National Disability Insurance Scheme (NDIS)
Information on getting started and the planning process for eligible NDIS participants

National Palliative Care Service Directory
Online tool to help you find local palliative care services

Your ALS Guide
Website with information, practical tips, educational videos, expert advice & helpful resources for families living with ALS in the USA.