Welcome

MND NSW provides information, support and education for people living with motor neurone disease, their families, friends and carers in NSW, ACT and NT. We also provide information and education about motor neurone disease for health, community and residential care professionals.

  • 1

Share your experiences with this research project

Genetic testing is becoming more widely available for people with motor neurone disease (MND). Currently, not everyone with MND is offered genetic testing, but this may change in the future. This study is being undertaken as part of a PhD project into genetic testing at the University of Technology Sydney.

Spring has finally arrived and there is some sunshine on the horizon. Our Support Services team are now out and about and able to conduct face to face visits again, particularly as NSW continues to report low numbers of community transmission. We will of course continue to practice good health and hygiene and will still need to ask screening questions before we visit. We’ll always be mindful of looking after the health of everyone in our community, so we’ll be wearing masks and keeping visits to a minimum. If we’re not well, even a sniffle, we’ll need to reschedule another appointment.

The past 9 months have seen many changes to how services operate due to COVID-19 restrictions.

In some circumstances Service Providers have had to do assessments for equipment and instruct how to use the equipment correctly and safely via video meetings to ensure physical distancing.

Ask the Experts 2020 – video recording

The MND NSW Ask The Experts Forum is held annually each year for people living with motor neurone disease, their family and friends. In 2020 the Ask the Experts was a live online event and the recording is now available for viewing.  

The Australian Bureau of Statistics has established that 1.2 million Australians have a communication disability, and this includes people living with MND who experience difficulties with their speech. This week is Speech Pathology week 2020 and the theme is ‘communicating with confidence’.

Things to be wary of in alternative or off-label products

In 2009, ALS Untangled was formed to help people with ALS (MND) make better informed decisions about alternative or off-label products. The team at ALS Untangled includes 120 clinicians and scientists from 11 countries and they collaboratively review new treatments and therapies that people within the ALS/MND community would like to know more about.

MND NSW staff member, Nicole, opens up about her experiences with MND 

I am quite often asked, ‘How can you work where you are?’ and always my reply is ‘It’s the most rewarding job I have ever done in my life.’ And I’ve done quite a few.

Subscribe to news and updates

Visit Our Facebook Page

See us on YouTube

Couldn't get to Ask the Experts or the SIG workshop?

Catch up at the MND NSW YouTube Channel.

yt logo rgb light 

 

About us

What is MND NSW and what do we do?

read more...
 

Find out more about MND

Resources for families and health professionals

read more...
 

Shop

Support our work. Buy MND NSW merchandise here.

read more...
 

Including MND NSW in your Will

Leaving MND NSW a gift in your Will can make all the difference to people living with motor neurone disease.

read more...