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.

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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’.

I spend a lot of time pondering what information you’d like me to share when we’re putting together our newsletters. This edition I have decided to keep the information both short and practical because there are so many things to focus on at the moment.

The MND Community have always been strong in supporting and encouraging one another. MND NSW are working hard to ensure these connections continue, particularly during the difficulties of 2020. To that end we are offering a range of online events and get togethers, that continue the tradition of information sharing within our community.

Ivan, a member of our MND community, has shared his recipe for a delicious soup that can be modified to cater to a variety of tastes and swallowing abilities.

Ivan created this recipe to enable him to still enjoy a hearty soup with his favourite ingredients but has also allowed for his own dietary and swallowing needs.

Drawing from his personal experience of having children with autism, Tommy Hilfiger began creating Tommy Adaptive fashion in 2016. Beginning with children’s clothing, the range proved so popular that it has now expanded to adult sizing. Tommy's Adaptive clothing range for men, women and children is now available in Australia.

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.

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