Top 5 Frequently Asked Questions from July 2026

Each month the MND InfoLine receives a wide range of enquiries from people living with MND, their families, and health professionals. We have rounded up the top 5 questions we’ve been asked lately from across NSW, ACT and NT. From medications to getting prepared for power outages, get practical information from trusted resources.

Question 1: Who can I contact for information and support with My Aged Care?

There is a range of support available for people living with MND who are navigating My Aged Care.

MND Advisor

Your MND Advisor can provide information and support to understand and navigate the aged care system.

Older Person Advocacy Network (OPAN)

OPAN provides free, confidential and independent information and advocacy support. You can visit their website Home - OPAN or call 1800 700 600.

Support from a care finder

A care finder can help people who need intensive support to navigate the aged care system and find support services to improve their quality of life. There are eligibility requirements for service.

A care finder can help with both accessing services for the first time and changing to new services and supports. More information can be found here: Help from a care finder | My Aged Care

Question 2: Is MND something my family can inherit?

Research suggests that a combination of risk factors including environmental factors and genetics can lead to a person developing MND. Approximately 15% MND diagnoses are due to a gene change inherited from a parent. This is called Familial MND. If a person knows that they have an MND-related gene change, it does not mean they will definitely go on to develop MND but they do have a higher likelihood of developing the disease.

If you are living with MND, you may consider diagnostic genetic testing to check if you have an MND-related gene. If a person in your family is living with MND and has a known MND-related gene, you can undergo predictive genetic testing.

It is important to speak with your GP or genetic counsellor to explore genetic testing options.

Learn more:

Familial MND and Genetic Testing factsheet

Question 3: How can I prepare for a power outage so I can continue using my essential assistive technology?

Power outages can happen and it is important to be prepared so you can continue using your essential assistive technology. Essential assistive technology can include electric wheelchairs, hoists, communication equipment. While life support equipment can include ventilators and Bilevel Positive Airway Pressure (BiPap) machine. If you're unsure whether your equipment qualifies, your doctor or electricity retailer can help.

Top tips to prepare for power outages:

Check for upcoming planned power outages with your electricity retailer
Speak to your multidisciplinary care team to find out whether there are back-up batteries for your device/model. Some models have a backup battery already installed
If you are using life support equipment such as a BiPap machine, you can register as a life support customer with your power company. By registering you will be kept up to date regarding scheduled outages and will be marked as a priority if there are power supply issues
Complete an Action Plan Checklist to assist in planning for a power outage
Consider purchasing an uninterruptible power supply (UPS). This is a device that provides power if there is a problem with normal electricity supply. These devices can provide power for up to 6 hours. Generators can also provide power temporarily to these machines.

Learn more:

Customers using life support equipment | Energy Made Easy
Ausgrid - Life Support Checklist Action Plan
Energy & Water Ombudsman NSW - Life support checklist Final.pdf

Question 4: I have just been diagnosed with MND, what medications are available?

Although there is no cure for MND, there are several medications available that may slow down the progression MND symptoms.

Riluzole is the most common medication and is available for people who are living with amyotrophic lateral sclerosis (ALS) and progressive bulbar palsy (PBP). It is given as a tablet or a liquid. Research shows that it may prolong life by up to 6-19 months
Edaravone is available for people living with ALS. It is given by IV infusion directly into the bloodstream. It is completed initially as 14 days of daily infusions, followed by 14 days of no treatment, then 10 infusions over 14 days, followed by 14 days of no treatment
Tofersen is available for people living with MND who have the SOD1 gene. Access to this medication is currently limited through clinical trials or the compassionate access program.

If you are considering one of these medications, it is important to talk to your neurologist.

Learn more:

Motor Neurone Disease Medications

Question 5: What is a Coordinator of Support and how can they help me?

A Coordinator of Support is a professional who can assist you with the implementation of your National Disability Insurance Scheme (NDIS) plan. Coordinators of Support at MND NSW have knowledge and expertise in the coordination of support for people living with MND and services available in your local area. They will work with you to:

Ensure your NDIS plan is implemented efficiently and runs smoothly
Address any plan changes or issues
Identify gaps in your supports and work with you to find other services to assist you.

If you are eligible for the NDIS, your MND Advisor will help you to apply and get linked in with the Coordinator of Support Service.