Karabar High School Year 7 students organised the Big Freeze MND fundraiser which has collected more than $12,000. Photo: Claire Fenwicke.
It was 12 degrees (but the real feel was much colder) when icy buckets of water were dumped over willing adults as teenagers cheered.
Motor neurone disease (MND) has been back in the Australian consciousness recently with South Sydney Rabbitohs enforcer Jai Arrow recently announcing he’s been diagnosed with the disease. AFL great and FightMND co-founder Neale Daniher died last month after battling the incurable condition for 13 years.
But for the students at Karabar High School, their fundraising efforts hit much closer to home.
Former teacher Sharon Kirkwood is living with MND, and two other teachers have lost family members to the disease.
“[Ms Kirkwood] was a PDHPE teacher, so she was pretty close to Miss Fisher, which is our year advisor,” Year 7 student Elsie explained.
“So she got the idea of a fundraiser and introduced that to us.”
Fellow student Joey added: “We all came together and we made a video talking about [MND] and our fundraiser.
“It feels good to be able to support this cause and help people who also have family members with MND.”
The fundraiser turned into a Big Freeze dunking of teachers and the year group has raised more than $12,000 towards finding a cure.
And it’s given the students a goal to return to each year.
“We have decided as the year group that this is our year tradition, so when we’re in Year 8 we’ll do it and so on until we’re Year 12,” Elsie said.
“Hopefully when we leave there’ll be another Year 7 group that will do it.”
Technology and applied sciences teacher Michelle Love also has personal experience with MND.
Her father had the disease for 18 months before his death.
“Dad was diagnosed in 2019; it was a really short battle,” Ms Love said.
“We almost look at that as a blessing in disguise because it’s such a horrible way to live.”
MND affects nerve communication with the brain, ultimately making it difficult for people to walk, talk and breathe.
Ms Love said it was incredibly difficult watching her father’s decline.
“We got to spend as much time as we could with him, but it’s not something I would want to ever see anyone go through, ever.”
But it is an unfortunate reality for people living in Canberra and Southern NSW.
University of Canberra Hospital’s ACT MND Clinic currently supports about 50 people living with the condition.
Clinic coordinator Jacqui Taylor said referrals had almost doubled since 2023-24 across younger and older populations.
“MND is a neuroprogressive condition and it is terminal. It’s on the rise and there’s no cure,” she said.
“There’s a huge focus at the moment on research towards a cure, but it’s also important that we don’t forget the element of care, and caring for people living with MND and their families.”
The ACT MND Clinic has a multidisciplinary health team to assist people with their mobility, speech, ability to swallow and mental function.
“For people where their body is impacted fully, there’s a lot to coordinate and if we didn’t have a multidisciplinary health team, patients would be going from health centre to health centre to hospital,” she said.
“This is a one-stop shop – clients see a palliative care specialist and our full allied health team, which includes physiotherapists, social workers, speech therapists, occupational therapists, psychologists, and dietitians.”
ACT MND Clinic occupational therapist Gemma Wall supports people with their daily activities, helping them to stay independent and safe in their homes and communities.
Ms Wall said this could be achieved through modifying activities or introducing assistive technology or equipment.
The work is challenging, but fulfilling.
“This role is probably equally the saddest and most rewarding job I’ve had to date,” Ms Wall said.
“I cannot imagine how overwhelming a diagnosis would be, but I really think we’re there to support people at every step of their journeys.”
Not everyone can be a health worker to support people with MND in the community.
Ms Love encouraged schools, students and everyone to throw their support behind the cause to find a cure.
“I’m always going to say pick MND, because I just think the research is so important, they have to find a cure,” she said.
“I know they’ve come close many times, so just to have that breakthrough would just be amazing, to stop any family having to go through the same.”
21 June is Global Motor Neurone Disease Awareness Day. More information can be found through the MND Association and donations can be made to FightMND.
