Des Hughes and Sylvia Lake are our latest Community Fundraising Champions, having held an Ice Bucket Challenge with the Central Coast Hash House Harriers for a number of years.
Des’ Story
Back in 2017 my best friend Dave Taylor was diagnosed with MND. He lived in the UK whilst I lived in NSW, Australia. Each time I went home to the UK Dave was worse and I could see he was suffering although putting on a brave face. He passed away during the COVID pandemic so I was unable to attend his funeral. I pledged on that day that I would honour Dave someway by raising fund and awareness of this hideous disease.
Having watched Dave's family go through the heartache of losing a loved one to MND, the provision of respite, support and education is so important. Without fundraising these support systems wouldn't be available at the time of such need.
My friend received support in the UK but I know of so many individuals here who have reached out to MND NSW for knowledge, telephone support, counselling, equipment and ongoing communication to aid them through the minefield of information in regard to this disease.
By chance I was watching TV and saw the AFL 'Ice Challenge' event in Melbourne. Neil Daniher reminded me of Dave and the challenges he faced and there and then I decided that this could be the fundraising event that I had been looking for.
I approached the Central Coast Hash House Harriers with regard to holding our own 'Ice Challenge' event after our regular weekly run. They unanimously agreed. With several weeks of planning and inclusion of other associated groups, our first event was held in June 2021.
The Central Coast Hash House Harriers are an outgoing diverse bunch of people of all ages who are always looking for fun events to support. The Ice Challenge seemed exactly the type of event for them.
The best part about our fundraising is the camaraderie of people who want to support and engage in the fundraising arena. The willingness of people to give up their time, their provisions and more to help out. The inclusion of everyone in creating a space where fun can be had via fancy dress, BBQ's and outlandish fun, laughter and joy whilst acknowledging the 'beast' behind the event.
Together we’ve raised funds for the provision of ongoing care, assistance and support for people with MND, and their families and friends, with the hope of one day finding a cure.
Special mention and thanks to:
The Central Coast Hash House Harriers
Peter and Diane Diggleman (Hosts)
The Central Coast Colts
Paul Eagle (Musician)
The Central Coast Champagne Harriettes
Admin team/collectors
Sylvia’s Story
I became a member of MND NSW in about 2008 when my brother-in-law was diagnosed with MND. MND NSW helped me to support my sister-in-law. We went to the bi-monthly Support Group meetings in Gosford and met lovely people in the same situation. We remain friends and still have occasional lunch get-togethers.
The Specialist care and advice of the CORT Team was invaluable with equipment being provided as the need arose and Ian was cared for at home right through his illness.
The MND Association continues to understand the needs of families in this situation and provides the assistance they require.
Joining in fundraising events is a way to raise awareness and support MND NSW in their quest to support people living with MND, and for a breakthrough in finding a cure.
If you would like to host your own Community Fundraising event for MND NSW like Des and Sylvia, click here for more information, or contact Fundraising Assistant Danielle Allen at
