Find out what's going on with our Support Services

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.

On to more positive news, we are moving ahead with our donated goods store. We are hoping to have this operational within the next 2 months. I will let you know when we launch. We will be able to accept items that are in near new condition and ready for use. If you are thinking of donating, please make sure that you remove any personal information such as name tags or in the case of electronic equipment please remember to log off any social media or cloud based applications and either reset or clear the device to help ensure your information doesn’t end up with someone else. Donated items that cannot be used in our FlexEquip Loan Pool will be sold with the monies raised going to support FlexEquip and our other MND Support Services. We receive very little in the way of Government funding so the donated goods store is a great way to make sure people living with MND can continue to access the supports and equipment they need.

It was my pleasure to be part of one of our new online support groups recently. If you haven’t ventured into one of these groups, then I would encourage you to do so. They have been a great way to link people from right across the State and to share experiences as well as tips for making life a little easier. If you want to know more about our online sessions, check out the MND Facebook page or our Blog which you can find here.

On other Education related news Ask the Experts will be held on Wednesday 5^th August and will be our first ever live stream event. To access the session all you need to do is head to our MND NSW Facebook page at 10.30am and listen in. We will be taking questions on the day as well as prior, to put to our experts. To ask a question prior to the day email us at This email address is being protected from spambots. You need JavaScript enabled to view it. and we will make sure it is included on the day where possible.

Here is the program:

• The Genetics of MND: What it means for me – presented by Genetic Counsellors Ashley Crook and Rosie Fell
• An overview of Australian MND Research – presented by Dr Gethin Thomas from MND Australia
• Research into the feasibility and effect of swallowing exercises and diet modifications for people living with MND – presented by Professor Vicki Flood from Sydney University

Ask the Experts is always an excellent event and because we don’t want anyone to miss out, we will be recording the session so others can watch at a time that suits them. The recording will be available via our Facebook Page and available via the MND NSW You Tube Channel. You can watch this recording HERE.

The team have also asked me to remind you all that we now have an online self-paced information program for anyone who is newly diagnosed or looking for a brief overview of MND and MND NSW’s services. If you would like to view this program please contact Phillip Anderson on our Information Line by calling 1800 777 175.

Til next time, stay safe.

Karen