Bec Daniher has seen first-hand the devastating impact of Motor Neurone Disease. Here the daughter of AFL legend and MND sufferer Neale Daniher speaks openly about the campaign to fight the disease – and how Coles is helping. You can support the cause by purchasing Coles Brand Australian Pork or a Big Freeze beanie from May 12.
Hope wears a blue beanie
When Bec Daniher’s father, AFL legend Neale Daniher, was diagnosed with Motor Neurone Disease (MND) in 2013, she knew virtually nothing about the condition – apart from the fact that British physicist Stephen Hawking was a fellow sufferer.
“I had no understanding of how it would affect my dad’s health,” she says. “I was in shock when I read that the average lifespan for someone with MND is just 27 months.”
As campaign director of FightMND, the charity co-founded by her father, Bec works tirelessly to raise funds to support research that she believes will eventually eradicate this brutal and unpredictable disease.
“Everyday tasks become progressively more difficult,” she says. “Dad has told me his body will never be as strong today as it was the day before.”
Last year Coles and its customers raised more than $5.2 million for FightMND through the sale of beanies and Coles Brand fresh pork, donations from customers and Coles’ Aussie pork farmers. This is the fourth year Coles is supporting the event, with Big Freeze beanies once again available at Coles supermarkets and Coles donating 10 cents from the sale of each pack of Coles Brand Australian Pork to the important cause.
Q: How many people in Australia have Motor Neurone Disease [MND] and is this number on the increase?
“About 2,000 people across Australia have MND at any one time, as two people lose their battle with the disease each day and two to three more people are diagnosed. The global forecast is for a dramatic increase in the disease over the next 25 years.”
Q: Science has unlocked many of the secrets of MND but not enough to provide an effective treatment – is that correct?
“Between 90 and 95 per cent of cases are sporadic so that makes it difficult to find a treatment or a cure when we don’t know what has caused it. But over the past five years researchers have developed a much better understanding of MND. We are headed in the right direction.”
Q: The annual Big Freeze fundraising campaign has been incredibly successful in the past – what is your target for 2021?
“We don’t set ourselves targets. For us every dollar counts in the fight against the disease we call The Beast. We’re just so grateful that each year the Australian people continue to support this cause.”
Q: Can you explain how the money raised by the sale beanies and Coles Brand Australian Pork is actually used?
“The funds are directed towards research to find effective treatments and, eventually, a cure. So far, we’ve been able to fund 11 clinical trials, 17 drug development projects and also support researchers with fellowships and scholarships.”
Q: Does MND affect people from a certain age group, or can anyone contract this disease?
“Most sufferers tend to fall within the 55 to 65 age group, but you do see people with MND at younger ages too. Our co-founder Dr Ian Davis was diagnosed when he was in his early 30s and we know a number of others who have unfortunately suffered the same diagnosis. Those cases are particularly difficult because people often have young families and are being knocked down at their prime.”
Q: Fight MND is almost 10 years old – is there a greater understanding of the disease in the community now?
“There has definitely been a significant increase in the public awareness of MND. When Dad was diagnosed in 2013, I knew what the letters stood for and that Professor Stephen Hawking had MND but had no understanding about how it would affect his health. Lifting awareness is important because MND can be a really isolating disease. Today, sufferers feel more part of the community and know that the public is aware of their fight.”
Q: What are the everyday challenges that sufferers face?
“Dad has told me his body will never be as strong today as it was the day before. Everyday tasks become progressively more difficult. And MND is an ever-changing condition – with care requirements constantly evolving. Everyone’s journey is really different.”
Q: Medical science is trying to unlock the secrets of MND – how hopeful are you that a cure can be found?
“I know a cure for MND can be found. It’s just going to take time and continued support for research. Advances in areas such as gene therapy are also providing a lot of hope for people with MND and their families.”
Q: How important is the involvement of Coles?
“Having Coles onboard has been absolutely incredible. Having Coles supermarkets as well as Coles Express stock our beanies nationwide makes the Big Freeze so accessible. We can’t thank Coles enough.”
Big Freeze beanies are on sale at Coles supermarkets and Coles Express nationally from May 12.
Coles is also donating 10 cents from the sale of all Coles Brand Australian Pork products in the meat and dairy departments from May 12 to June 22 to Fight MND.
The seventh annual Big Freeze is scheduled to take place at the Melbourne Cricket Ground on June 14, 2021.