hands held together with no background

Resilience. Hope. Community.

When I was thinking about what to write for this edition of our newsletter, those were the words that came to mind. While the restrictions and challenges of COVID-19 have surrounded us all over the last months, what has come through is the gentle toughness of the MND Community.

Our MND Week Facebook campaign, where we came together to share our stories and photos, very ably demonstrates my point. It was so encouraging to see the words of support and genuine feeling that were offered as each story and each photo was posted, and as every cornflower was added to our Field of Cornflowers.This is a tough disease but the MND Community continue to show they are tougher.

I would also like to thank you all for working with us to maintain social distancing. Together we have proven that we're an adaptable community, with much of our work with you all being undertaken via video or telephone link up. Our education and support groups headed online, and we have even created new opportunities for connection with our online carer catch ups. We plan to continue to offer our education as an online option and will wait for more detail on when we can safely resume face to face events.

If you or a family member have been recently diagnosed with MND and you would like to learn more or to ask questions, we invite you to attend one of the Information Events that we are hosting online via the Google Meet platform soon! We also have  online Peer Support for Carers where you can connect with others caring for a loved one with MND and have your questions answered by a member of our education and carer support team. Save the date for Ask the Experts which shall be live streaming on 5 August. We will have MND specialists providing presentations on a variety of topics from genetics to research.

Our MND Advisors and our Coordination of Support team are now able to provide in home visits. We have, like most organisations, put in place some extra steps to ensure we remain compliant with social distancing and health advice to keep everyone safe.  If you are in need of a visit, please speak with your MND Advisor or your NDIS Coordinator of Supports and they will arrange this with you.

FlexEquip had a short closure this month for a quick stock take as we finish off this financial year. They are back operating but tell me that things with delivery times are still looking a little longer than they were in pre-Covid-19 times. If something is urgent, please contact either me or Maree Hibbert on 02 8877 0999 so that we can look at what we can do to help.

This month we welcomed Emma Butler to our team as our New MND Advisor for Newcastle and the Far North Coast. Emma is an experienced dietician and has vast experience in navigating health services in the area. We're looking forward to working with her. We also have some new staff joining us over the coming weeks. The good news is that our Coordination of Supports team is expanding to help keep up with demand and a new MND Advisor is joining us next week to support our members in the Southern Sydney Metro region.

I would also like to thank our Support Services team for keeping up the good work over the past months. Given that we are a small team and mostly part time, I am incredibly proud that they have been able to do what they have done given the challenges we have faced in trying to make sure our services continued amid the restrictions.  We are not perfect, but we are passionate about supporting our members and their families.

Take care