Naomi Cocksedge lost her mother and sister to Motor Neurone Disease and now her brother has been diagnosed. She tells GREG ELLIS how she and other firefighters are going to great heights to find a cure.
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When Naomi Cocksedge dons her full firefighting kit weighing 20kgs and climbs up 1504 stairs on the 98 floor high Sydney Tower Eye she will be doing it for her family.
Mrs Cocksedge is a Warrawong firefighter who has taken on the annual challenge every year since it was started three years ago by members of Fire & Rescue NSW.
Over that time she has helped raise $1 million to help research into Motor Neurone Disease (MND) and the team of firefighters she is part of for the challenge has this year raised more than $25,000 on its own.
Several days a week Mrs Cocksedge and other members of Team Zulu are often seen training on steps along The Blue Mile near Wollongong Harbour.
They carry with them white collection buckets and interact with the community.
But what many don’t know is the story behind what inspires Mrs Cocksedge and some other members of the team to push themselves to the limit physically once a year. And in the process raised as much as they can for MND research.
Fellow team member and Warrawong Fire Station colleague Vanessa McKellar has taken on the Sydney Tower Eye challenge the last two years and organised a major fundraising event for Team Zulu this year.
Ms McKellar’s lost a member of her own family to MND.
She said that family connection with the disease and her inspirational firefighting friend were the motivation for her to coordinate a sell-out High Tea at Wollongong Golf Club in mid September. It raised raised $4500.
Other firefighters in Team Zulu come from Chester Hill, Wollongong and Bulli Fire Stations and all draw strength from Mrs Cocksedge’s determination to raise funds and awareness.
“You can have as many in a team as you want. We have seven. Naomi and her family are a big part of our motivation for the climb this Saturday,” Mrs McKellar said.
“We do it mainly because of Naomi and the way MND has affected her family. And I also lost my grandmother to the disease.”
Mrs Cocksedge tragically lost her mother Pauline to MND in 2002, sister Sarah in 2008 and many other relatives to MND.
- Read more: Sarah's life cut short
And now her brother Dr Justin Yerbury has been diagnosed with the disease.
“He is actually a researcher for Motor Neurone Disease at Wollongong University. He had dedicated his life to finding a cure and now he is suffering with the disease,” she said.
Mrs Cocksedge also has an aunty and cousin living with MND.
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Each day two Australians die from Motor Neurone Disease.
Most patients die within three to five years of first experiencing symptoms. The disease presently has no known cause or cure which is why research is so urgently sought.
Macquarie University has partnered with the Fire & Rescue NSW with the annual tower climb and this Saturday hundreds firefighters from across Australia and around the world are hoping to match the amount raised the last two years.
Mrs Cocksedge knows how important that is and what the funding from the last two tower climbs is achieving has encouraged her and her team mates to raise even more this year.
It is also why her team have called for businesses to consider getting behind Team Zulu which has been training hard. But the main goal is to raise as much funding as they can.
My mum passed away in 2002, then my sister passed away in 2008 and currenty my brother is diagnosed with MND. He had dedicated his life to finding a cure and now he is suffering with the disease.
- Naomi Cocksedge
“We are giving it a red hot go but we don’t think any of us are going to smash any record times,” Mrs Cocksedge said.
“We have been training at Sublime Point as well.”
- Read more: Researcher out to beat cruel illness
The firefighter who founded the event Matt Pridham, formerly of Kiama Downs, decided to do it after his mate Adam Regal, of Flinders, was diagnosed. Mr Pridham contacted Mrs Cocksedge first because he know she had already been raising funds for research.
“I jumped on board as a participant because of my family history,” Mrs Cocksedge said.
“Matt actually rang me because he had heard I had run previous events. He asked if I had any tips because he wanted to run an event. I had run High Teas and movie nights but he has taken it to a much higher level.”
“He has blown it out of the park. We raised more than $500,000 last year which is pretty amazing”.
“Our team has raised $25,000 so far and that has mainly been through our social media campaign. And our high tea went really well. We are hoping to get a few businesses on board.”
- Read more: Link between MND, dementia explored
Mr Regal attended the recent high tea and said he was overwhelmed and deeply honoured by the event.
“Other MND sufferers and I firmly believe that what the firies are doing is a game changer. We are all hopeful of a breakthrough soon,” he said.
- Read more: Motor Neurone Disease: an endless nightmare
Professor Dominic Rowe, of Macquarie University’s MND Research Clinic, said money to fund the necessary research was the key to finding a cure.
Prof Rowe said the money raised from the tower climb in 2016 was the reason two clinical trials into Motor Neurone Disease were presently being carried out in 2017.
“This is the first time we have ever had two trials in one year,” he said.
“We can do that because of the fundraising from last year”.
- Read more: Film to help MND cause