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.
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.
