With thanks to funding from Ms Sharon Green & Mr Marcel Skjald, we designed an event for past MND carers and held a pilot on the Central Coast in June 2026.
Purpose
Past MND carers have told us that after their person with MND dies, there is often a sense of disconnection from the MND community.
This can happen for a number of reasons, including the withdrawal of MND NSW services and a need for grieving space, amongst many others.
Reestablishing this relationship with the MND community underpins the purpose of the Craft and Connect event. It brings together family and friends who have lost a loved one to MND, share experience and be supported by others.
It is an opportunity to remember the person who has died from MND and reflect on the caring journey with other people who truly understand it.
Each attendee is given their own craft box with all the supplies needed to create a lovely bunch of painted blue cornflowers – and they look fantastic!
The Pilot
We welcomed 7 past carers to the pilot event, and this is some of the feedback they gave to us.
There was consensus the event should be offered to others in the future with one attendee telling us it “helps with the grieving process.”
When asked what they liked most about the event, one attendee told us they liked “meeting and communicating with other past carers” another commented that they liked “sharing experiences and feelings”.
Another attendee said hearing each other’s “story about managing grief – straight after and now” was what they enjoyed the most.
Other attendees said they enjoyed hearing about “how others are coping” and what each person “went through, things they’ve done to help, self-care, etc.”
We heard that the craft activity was a “lovely put together kit and the idea of ‘doing things’ while talking was 100% - couldn’t do anything better.”
Some attendees also gave us ideas about how we can improve the event and we are exploring this feedback to incorporate in our future plans.
What’s next?
We are pleased to share that we will roll the event out over the next few months with the aim of offering it to past MND carers in metro and regional areas.
Thank you
We want to take this opportunity to thank those who attended on the day. Thank you for sharing your experience, supporting others, and for staying connected with the MND community.
Another big thank you to Sharon and Marcel. Your contribution has allowed us to host this meaningful event and continue to support families impacted by MND.
Questions
For questions about the event, please contact 1800 777 175 or
If you would like to speak with someone about funding a program, like Sharon and Marcel, please contact our fundraising team on 1800 777 175 or
