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.
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.
State MND Association service introduction: easy English
A simple, easy to read poster designed to help people living with MND access support from their local MND Association.
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
Fact sheet with an overview of the effect of MND on breathing and the respiratory system
Breathing & MND: medications and non-invasive ventilation
Fact sheet on practical techniques to help breathing
Breathing & MND: what you can do
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
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 while living with MND
Fact sheet outlining techniques to manage weight and healthy nutrition
MND evidence-based treatments and support: an overview
Fact sheet on treatments and interventions to live better and independently with MND for longer
Multidisciplinary care
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
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
The practical tools in this section have been created to help you make others aware of your needs, wants and preferences.
A 2-page interactive and printable pdf form with space to record your specific needs with MND. The form is designed to help care workers and hospital staff give you care that meets your needs and wishes. You, a carer or health professional can complete the form and send it to the hospital ward before you are admitted, or given to emergency staff on arrival. It can also be used at home, or to give to new service providers.
This 1-page interactive and printable A4 lets medical staff know about your high priority care needs with MND. Depending on the ward or home set-up, this can be posted on the wall above your bed, or at the bedside.
These resources were created in collaboration with the National MND Lived Experience Network and the State MND Associations.
If you have MND, the following resources can help you make decisions about therapies, treatments or care
Guides
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 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
Fact sheet on practical techniques to help breathing
Considering gastrostomy: PEG & RIG
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
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.
MND Patient Decision tools
A series of evidence-based decision tools for people living with MND. Designed to help make difficult decisions about healthcare or quality of life. Tools deal specifically with gastrostomy, assisted ventilation and genetic testing.
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.
Exercise and motor neurone disease (MND)
Short animation about how exercise can help people living with MND maintain strength, mobility, balance and overall wellbeing, for longer.
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.
MND Association service introduction: easy English
A simple, easy to read poster designed to help people living with MND access support from their local MND Association.
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
Fact sheet on treatments and interventions to live better and independently with MND for longer
Multidisciplinary care
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
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
Poster
MND Association service introduction: easy English
A simple, easy to read poster designed to help people living with MND access support from their local MND Association.
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.
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.
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.
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
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.
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