This year’s Walk to d’Feet MND was a little different but the thing we really loved about it was the way it allowed us to all Walk together. Our MND community is the best and we are so thankful that we were able to share this experience with so many people wherever they were (even across the world) and hear their stories throughout the day.

In late October Debra Larizza a long-term volunteer and Life Member of MND NSW is going to retire. While no-one deserves the chance to relax more than Debra, we can’t say that we’re not disappointed she’s going, because she is definitely one of the best volunteers ever!

One of the many inspiring qualities of the MND Community is the way that it demonstrates support and encouragement. This year MND NSW has introduced online options to allow people with MND and their family members to connect, learn and to support one another without distance being a barrier. We have had family members of people with MND in NSW & ACT connect to our events from other parts of Australia, New Zealand and Singapore and as far away as Ireland!

State of Play - Webinar Series 2020

State of Play is a 4-part Webinar Series organised by MND Research Australia. It is dedicated to all members of the MND Community and aims to introduce the advancements of the research community in Australia.

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.

Many organisations have adjusted positively to the challenges presented by lock downs and the need to maintain physical distancing and increased hygiene. We’ve seen an expansion in the capacity of many service providers, and the NDIS, to deliver services remotely.