Blog

We’re running a series of free information days throughout the year at different locations across the state especially for you. Our first “Living well with MND” day will be held at the Gosford RSL club on Thursday 27 February. We’d love for you to attend one of these education events.

At a previous Living well with MND day one person said “attending Living well with MND was such a valuable experience for all our family. We now feel more confident, informed about our choices and what we can do to make life with MND easier. It was good to meet others in similar situations and we learnt a great deal. A great day!”

Karen Martin our Manager of Service Support, Kristina Dodds our Education and Carer Support Program Coordinator along with Sue Donaldson an MND Advisor, recently represented MND NSW at the 30^th International Symposiumon ALS/MND in Perth last December.

With over 850 people from all over the world (talking things like the latest in MND research, therapeutic strategies, clinical trials, emerging biomarkers, palliative care, genetics verses environment debates and improving care practice), this annual 3 day event is the world’s premier meet up on ALS/MND and brings together researchers, clinicians and people with MND.

Here are some of the team’s biggest takeaways from the event.

Your smart phone is ringing, you’ve been waiting for an important call but you can’t seem to find your handset. You start searching for it—in your handbag, around the house, did you leave it in the wardrobe?—only to have the caller hang up before you even swipe the screen, let alone have a chance to say ‘hello’. It’s a scenario we can all relate to. And for those whose movement has become affected by MND the challenge of answering the phone can become an immensely frustrating experience. Especially when waiting for medical updates and information or when you miss calls from loved ones. That’s why we recommend extending the ring time on your smartphone, so you have a lot more time to answer.

Advance is the newsletter of the MND Research Institute of Australia - the research arm of MND Australia.

Click the link below to read the December 2019 edition.

A colour run was organised by Tracy Anderson from Totally Tumbling and Tricks to raise funds for MND research. It was a fun, and messy, day out for eveyone who participated! Our thanks to Bronwyn Wood who attended on behalf of MND NSW. A big thank you to Tracy for all her work towards this event which raised $3,298 for MND research.