Enquiries through the info line phone and email were up around 15% in February as compared to January (which we thought was a very busy start to the year).

We love responding to your questions, so make sure you keep us even busier this month and get in touch with us at This email address is being protected from spambots. You need JavaScript enabled to view it. or 1800 777 175.

Here are our top 5 questions and answers from February.

1.   How can I get involved in fundraising with MND NSW?

There are several ways to get involved in supporting MND NSW, fundraising is essential for MND NSW to provide the many services that we do, including our FlexEquip, MND Advisors, Education and Carer Programs. MND NSW only receives 17% of its funding from government grants, 25% from NDIS support with the remainder coming from our supporters through donations and community events.

Attend a walk.

Walk to Defeat MND events are a series of walks held throughout the year across various locations which aim to raise funds and awareness for research and support for people living with MND.

For further information and to find your local walk visit- Walk to Defeat MND.

Organise a community event.

Organising a community event is another way to get involved with MND NSW. Supporters have organised events including golf days, a movie night and evening events like a ball or gala. One supporter has organised a lawn mower race and others have entered other personal challenges like giving up coffee or chocolate for a period of time. You can get creative! The online platform MND Blue can assist in putting your ideas into action, for more information visit MND Blue

Drink tea for MND

Drink Tea for MND is an opportunity for you to host a morning tea with your friends. These events can be held at any time. However, MND Week (of 17-21 June) is the perfect time to host an event and raise awareness and funds for people living with motor neurone disease.

For more information on how to host an event visit- Drink Tea for MND.

Buy merchandise

We have a range of merchandise available to purchase. You can buy MND NSW clothing, plush toys, temporary tattoos and a range of our publications. To view our full range visit MND NSW Shop.

2.   How do I get involved in the Day of Hope and Remembrance?

Our annual Day of Hope and Remembrance is on 15 June 2024. The day is an opportunity for people living with MND, families and health and community professionals to come together to unite in their shared experiences of MND. The day will consist of a short ceremony with guest speakers followed by an afternoon tea where you can connect with other members of the MND community.

You can get involved in the day by submitting a photo for display, lighting a candle, supporting the running of the event, or even saying a few words.

For more information and to register, please visit Day of Hope and Remembrance.

3.   Are there any tips available to help maintain mouth and teeth care?

People with MND may have trouble maintaining mouth and teeth health. This may be caused by the weakening of tongue and throat muscles, resulting in difficulty clearing food particles. Additionally, antibacterial and anti-viral properties of saliva are not as effective when a person has saliva that is thin or thick or when they have dry mouth.

There are a few strategies that can assist in maintaining mouth and teeth care for people who may have difficulties doing so. This includes using a low foaming toothpaste or an electric toothbrush, avoiding alcohol-based mouthwashes as they can dry the mouth, daily checks of the mouth to look for traces of food and ulcers.

Swabbing the mouth with non-alcohol water-based solutions of bicarb soda, salt and peppermint is another alternative to brushing teeth.

The above information is from page 25 of our Living with Motor Neurone Disease: day to day for people with MND, their family and friends.

People living with MND, and their carers can request a hard copy for free by contacting their MND Advisor or the Info Line.

4.   Should I exercise if I have MND?

Following a MND diagnosis, participating in physical activity can help in increasing range of motion, improving physical and emotional wellbeing along with potentially reducing pain. Research suggests that enjoyment of physical activity is more motivating for some people with MND than a formal exercise program.[1]

MND Australia have recently released a short video covering this topic. However, health professionals such as physiotherapists can assist in developing an exercise program specific to your situation.

5.   How do I join the mailing list to receive information about MND and upcoming events for health professionals?

The MND Special Interest Group is an informal network of health and community care professionals who have an interest in the care of people with MND.

By joining the group, you will receive a quarterly newsletter with information from MND NSW, MND Vic and MND Australia. You will also receive an exclusive invitation to our SIG workshop which is being held this year in Sydney on 26 September 2024. Save the date, registration details will be advertised to SIG members soon.

To register for the Special Interest Group click here.



[1] 1. T. Sia, “Physical Activities Participation in People with MND: PASE as a Measuring Tool”, Allied Professionals Forum, December 3, 2020


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