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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Last month, I wrote to you excitedly and announced that we were back out and about and providing face to face visits. This month, I have to let you know that we have had to take a cautious step back while the current issues in NSW are being managed. We are providing some limited face to face services where possible, so please be aware we will do our best to accommodate your requests where possible and where safe to do so. As I mentioned in our last newsletter, this is no doubt, our new normal for the foreseeable future.

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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