When Bec Daniher’s father, AFL legend Neale Daniher, was first diagnosed with Motor Neurone Disease (MND) in mid-2013, she knew virtually nothing about the illness that not only had no cure, but no treatment.
“When Dad was first diagnosed, I had no real understanding of the disease or how it would impact his health,” Bec says. “I was shocked to learn that the average life expectancy of a person living with MND is only 27 months.”
As Campaign Director for FightMND, the charity co-founded by her father, Bec works tirelessly to help raise funds for MND research and care for people living with the disease.
“MND is a beast of a disease – it gradually takes away a person’s use of their arms and legs, ability to eat, speak, swallow and eventually breathe,” Bec says. “It’s heartbreaking to watch a family member progressively get weaker every day.”
However, research is the best weapon in the fight against MND, she says, particularly focussed on fast-tracking new treatments and driving discoveries towards a cure.
Last year, Coles and its customers helped raise a record-breaking $6.78 million for FightMND through the sale of Big Freeze beanies and Coles Brand fresh pork, as well as donations from customers and Coles Aussie Pork Farmers.
This is the fifth year that Coles is supporting the annual campaign, with Big Freeze beanies once again available at Coles supermarkets and Coles Express nationwide from 11 May. Coles will also donate 10 cents from the sale of every pack of Coles Brand Australian Pork to the cause.
Q: How many people in Australia have Motor Neurone Disease [MND] and is this number on the increase?
“More than 2,000 Australians are currently living with MND. Today, two people will die from the disease and two more will be diagnosed. Little is known about what causes MND, however, rates of MND have been increasing in the last decade with global forecasts predicting a dramatic increase 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?
“MND was first described 150 years ago, and for the better part of a century it was a mystery. Between 90 and 95 per cent of MND cases are sporadic and symptoms vary, which makes it difficult to treat. But through funding innovative research, we’re increasing our chances of a scientific breakthrough. Every day, we are learning more about the disease and how best to fight it. The research momentum has only just begun. We know how personally devastating MND is, and we won’t stop until a treatment or cure is found.”
Q: The annual Big Freeze fundraising campaign has been incredibly successful in the past – what is your target for 2022?
“For us, every dollar counts in the fight against this beast of a disease. Every donation takes us another step closer to finding a cure. Thanks to the generous and ongoing support of the Australian public, we’ve been able to invest more than $55.9 million into MND research since 2014 and we couldn’t be more grateful.”
Q: Can you explain how the money raised by the sale beanies and Coles Brand Australian Pork is actually used?
“Funds raised through the Big Freeze campaign are invested in world-class research to find effective treatments and ultimately a cure for MND. We’re also investing in research to give us a better understanding of the causes of the disease so that we can stop it in its tracks.
“So far, we’ve funded 12 clinical trials and 22 drug development projects as well as fellowships and scholarships for researchers. People living with MND now have more opportunities to participate in research or clinical trials than ever before. It’s projects like these that will help us find effective treatments sooner.”
Q: Does MND affect people from a certain age group, or can anyone contract this disease?
“MND can affect people of any age, but it is more likely to be diagnosed in people aged between 50-70. While relatively uncommon, in some cases, symptoms can first appear in your twenties or thirties. Our co-founder Dr Ian Davis was diagnosed when he was in his early thirties. Your lifetime risk of developing MND is one in 300.”
Q: FightMND is almost 10 years old – is there a greater understanding of the disease in the community now?
“Since we first started, there has been a significant increase in the public’s awareness and understanding of MND. Through the work of FightMND and my Dad’s public fight with the disease, we have been able to shine a spotlight on MND and educate millions about its existence. We’ve been able to form an inclusive community that reaches every corner of Australia, united in wearing our blue beanies as well as our determination to fight back against the Beast.”
Q: What are the everyday challenges that sufferers face?
“MND is an ever-changing condition – everyone’s journey and care needs are different. Everyday tasks like moving around, breathing, swallowing and even communicating become more difficult. As my Dad’s disease progresses, he’s told me that his body will never be as strong today as it was the day before.”
Q: Medical science is trying to unlock the secrets of MND – how hopeful are you that a cure can be found?
“I know that a cure for MND can be found and I believe that we are closer than ever – it’s just going to take continued funding and support for research to keep the momentum going. Our research capacity and capability in Australia continue to grow, and 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?
“It is through the support of Coles and their customers that we are able to make a real impact in the fight against MND. Every dollar raised through our Big Freeze beanies or Coles Aussie Pork product gives hope to people living with MND. We can’t thank Coles enough for their generosity and support and look forward to making this year’s campaign even bigger!”
Big Freeze beanies are on sale at Coles supermarkets nationally from May 11-June 21, and in Coles Express stores from May 11-June 29 (or until stocks last). They are $25 each.
Coles is donating 10 cents from the sale of each pack of Coles Brand Australian Pork products in the meat and dairy departments during this period to FightMND. And 20 cents from the sale of every Coles Free Range pork product during the period will be donated to FightMND.
The eighth annual Big Freeze is scheduled to take place at the Melbourne Cricket Ground on June 13, 2022.