Strength in numbers: it’s a matter of survival

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One of the most serious epidemics that we face in Australia today is the ever-increasing number of charities and not-for-profit organisation.

At last count, Australia has the highest number of charities per person than ever before, with close to 57,000 charities across the country, equating to one charity for every 422 Australians. That’s even higher than in the United States, where there is one charity for every 648 Americans.

While I have no doubt that each organisation is doing worthwhile and valuable work the sheer numbers of charities in the marketplace means that each new player has to battle to get their message across. Also, the charity dollar is not growing at the same rate as the number of charities and this means that each organisation receives far less than they need in terms of donations, volunteers, resources and media coverage. Sometimes I wonder if these new charities add real value to the fight against whatever it is they’re fighting for.

In order to ensure that the charity sector is maximising its impact there needs to be greater collaboration and stronger partnerships

The Pancreatic Cancer Alliance

In 2015, I was challenged by a leading Melbourne based Philanthropist to use my convening power to work with the various pancreatic organisations in Australia to maximise their impact on this insidious disease. The group of organisations all dedicated to fighting pancreatic cancer made the decision to stop competing and start working together, with the result being The Pancreatic Cancer Alliance (‘The Alliance’), a unique collaboration committed to raising awareness of, and improving outcomes for, pancreatic cancer in Australia.

Pancreatic cancer is the fifth most common cause of cancer-related death in Australia and has the lowest five-year survival rate of any cancer in Australia (at less than 7%), and yet very little progress had been made in terms of medical research for close to four decades. Pancreatic cancer is rarely detected in its early stages, and typically spreads rapidly, and at the current survival rates it means death within five years for 93% of people diagnosed. These figures are simply unacceptable, which is why the members of The Alliance put their differences aside and chose to begin working together towards their common goal.

Rather than competing for the limited funding and resources available, why not join forces to fight against our shared enemy?

The founding members of the Pancreatic Cancer Alliance are (in alphabetical order): Avner Pancreatic Cancer Foundation; Cancer Australia; Garvan Institute of Medical Research; GI Cancer Institute; Karen Livingstone; Pancare Foundation; Patron – Tracey Spicer, and #PurpleOurWorld.

These organisations and individuals, once considered competitors in the space, are combining resources and raising greater awareness of pancreatic cancer in Australia, and driving much needed funds into medical research. The hope is that more research will lead to breakthroughs in our understanding of pancreatic cancer; to the development of tests for early detection; help us find ways to prevent pancreatic cancer and ultimately, enable new therapies to be developed to treat pancreatic cancer and stop it from spreading.

One of The Alliance’s key awareness raising activities was the establishment of Pancreatic Cancer Awareness Month, which takes place each November. The aalliance+launchim of Pancreatic Cancer Awareness Month is to raise awareness of the signs and symptoms of the disease, share the stories of people living with pancreatic cancer, as well as those who have lost their battle with the disease, and raise significant funds to drive new research.

The Alliance has already made great headway in the fight against pancreatic cancer, with patient trials currently underway for the use of Palbociclib, a breast cancer drug, to treat pancreatic cancer. These trials are off the back of the work of a Garvan research team, led by Dr Marina Pajic, which identified in preclinical models that this particular breast cancer drug effectively targets a major subtype of pancreatic cancer, one that affects two out of three patients diagnosed.

It will be interesting to see whether the success of The Pancreatic Cancer Alliance leads to collaborations between other not for profits with common causes. Personally, I believe it makes a lot of sense to pool the available resources and talents, and work together towards shared goals, rather than competing.

Childhood Cancers Awareness Month – September 2017

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It’s Time to Roar!

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September of every year is Childhood Cancers Awareness Month, a time to reflect on how far we’ve come in the battle against childhood cancers, but also a time to regroup and focus on how much more we need to achieve.

Cancer continues to kill more children than any other disease, with around 950 Australian children and teenagers diagnosed each year, and almost three dying every week. Childhood cancers can be very hard to treat, and many come with a high risk of mortality. Worldwide, an estimated 175,000 children are diagnosed with cancer every year – in simple terms, a child is diagnosed with cancer somewhere in the world every two minutes.

 

These figures are shocking and unacceptable.   Investment in research into treatments for childhood cancers is imperative; childhood cancers have different causes to the cancers experienced by adults, and they come in different forms. It’s not simply a matter of applying smaller doses of adult treatments – kids with cancer need specific, tailored treatments if we are to ever beat these insidious diseases.

In Australia, an estimated one in 900 adults aged 16 – 45 years is a survivor of childhood cancer, and these days eight out of 10 children who are diagnosed with cancer will survive. These figures might sound fantastic – and when you compare it to the fact that 60 years ago almost no one survived childhood cancer – but unfortunately, surviving cancer comes with its own drawbacks. As many as 70% of those who survive childhood cancer go on to experience significant, chronic health conditions throughout their lives, with conditions such as infertility, neurocognitive disorders, hearing and vision loss very common among childhood cancer survivors, as well as secondary cancers. Sometimes this is due to the incredibly taxing treatments that the child has undergone to beat their cancer, but other times we just don’t know what the cause is.

Simply surviving cancer isn’t enough – we need to find the best treatments to help kids beat these diseases and thrive in their later lives. Unlike many adult cancers, childhood cancers have no link with lifestyle, and (so far) are not preventable. There’s nothing these kids can do to reduce their odds of acquiring cancer, so we need to do everything in our power to help them fight it.

At the Garvan Institute of Medical Research, we believe that the way we’re going to defeat childhood cancer is through Personalised Medicine. Personalised Medicine involves researchers sequencing the genomes of people with cancer to provide doctors with extraordinary, high-level information to better target treatments. Sequencing an individual’s genome – that is, their DNA – can reveal changes in genes that can lead to diseases, including cancer. It can also identify how an individual will respond to certain treatments.

Personalised Medicine is already being used to treat both adult and childhood cancers, but, unsurprisingly, this individualised approach comes at a huge financial cost. 

Garvan and Lions Partnership

To further the work in this field, the Garvan Institute of Medical Research has teamed up with The Lions Club to form the ‘Lions Kids Cancer Genome Project’, which seeks to sequence the genomes of 400 children with high risk, aggressive cancers. These children will then be able to access the best possible treatment options for their specific cancers. The added bonus is that having this kind of detailed information on 400 individuals with cancer will provide an incredible database of information that can be used by researchers and doctors all around the world.

The Australian Lions Childhood Cancer Research Foundation and the Lions Club International Foundation (LCIF) have generously committed $3.2 million to fund this project, with another $800,000 needing to be fundraised. So far, around $75,000 of that target has been raised by generous and committed members of the Lions community.

This project will enable Garvan to work with the Children’s Cancer Institute to help kids with cancer all over the world to have a better chance at a long and healthy life.

Click to find out more, or to get involved in some fundraising activities.

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Diabetes – the Epidemic of the 21st Century

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Garvan-Type-2-Diabetes-Factsheet-Image-300x155Type 2 Diabetes (T2D) is one of the biggest challenges currently faced by Australia’s health care system, with more than one million Australians living with T2D.

T2D is an international issue with, approximately 340 million people impacted by T2D worldwide. This figure is growing by the hour. Labelled the ‘epidemic of the 21stcentury’, diabetes is a serious condition that needs to be monitored and managed daily, and one that, without proper management, can cause people to experience complications including heart attack, stroke, kidney disease, poor circulation leading to amputation, depression, anxiety and even loss of sight.

What causes Diabetes?

Despite the number of people affected by diabetes in Australia and around the world, we are still searching for answers when it comes to its causes.

T2D is often described as a ‘lifestyle disease’, and has been directly linked to poor diet and limited physical activity, as well as a possible family link T2D , is a progressive condition which sees the body gradually become resistant to the normal effects of insulin, or lose the capacity to produce enough insulin. T2D may remain undiagnosed for many years. In the early stages of the disease, treatment is focused on lifestyle changes, with improved diet and exercise, weight loss and quitting smoking top of the list.

Risk factors for developing T2D include being overweight or obese, having a family history of diabetes (any type), being over 45 years old, having high blood pressure, and a poor diet and limited physical activity.

Genetics also play a role, with people from Aboriginal and Torres Strait Islander, Pacific Islander, Chinese or Indian backgrounds having a higher propensity for developing T2D.

What are we doing to put the brakes on this epidemic?

I’m happy to report that we’re making headway, with more ground-breaking work throughout 2017. This year I have been heavily involved in securing philanthropic support for a range of vital medical research projects and it has been wonderful to see that Australia is at forefront of research into the causes of, prevention of, and treatments for, diabetes.

While we have a long way to go, there is a positive feeling that the researchers are on the right track to slow and eventually halting the epidemic of diabetes in Australia, and around the world.

To mark World Diabetes Day, held on the 14th November each year, I encourage you to complete this Diabetes Risk Calculator developed by Diabetes Australia to determine your own risk of developing diabetes. Always see your doctor if you have any concerns – early identification of T2D can mean that the condition can be reversed with diet and lifestyle changes, before it puts other aspects of your health at risk.

Pancreatic Cancer Awareness Month – November 2017

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Let’s shine some light on this silent killer

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November is Pancreatic Cancer Awareness Month, and World Pancreatic Cancer Day falls on the 16th November. To mark the occasion, this month’s blog post is all about pancreatic cancer – what it is, who it affects, and what we’re doing to try and combat it.

Despite being the fifth most common cause of cancer-related deaths in Australia, pancreatic cancer has a very low profile, with only 5% of Australians ranking it as their preferred choice for more research investment. Shockingly, pancreatic cancer has a five-year survival rate of just 6.8% – a figure that has barely improved for thirty years.

Pancreatic cancer is by no means uncommon, with more than 3,000 new diagnoses each year in Australia, most of those in the over 60s age bracket. In fact, pancreatic cancer is quite rare in people under 40 years.

It is often called a ‘silent disease’, as changes to the pancreas – which is located behind the stomach – are commonly not noticed until the cancer grows large enough to affect surrounding organs. Early symptoms such as nausea, vomiting and changes in bowel movements can be attributed to many other conditions, and it is not until the advanced stages of the disease that symptoms become more pronounced and obvious. The more noticeable signs and symptoms of pancreatic cancer can include upper abdominal pain, jaundice, loss of appetite, weight loss, depression and/or blood clots, however these may not appear until the cancer is quite advanced.

Late detection and diagnosis is what leads to the dismally low five-year survival rates – sadly, by the time pancreatic cancer is detected, more often than not it is too late to do much about it.

Unfortunately, little is known about the causes of pancreatic cancer, although we do know that it can be caused by mutations in a person’s genes. Other risk factors for pancreatic cancer include smoking, obesity and certain genetic conditions, and people who suffer from chronic pancreatitis (inflammation of the pancreas) are also at serious risk of developing pancreatic cancer.

So, what are we doing about this awful, deadly cancer?

Garvan has teamed up with some of Australia’s leading cancer researchers and pancreatic cancer advocates to form the Pancreatic Cancer Alliance, a group dedicated to raising awareness and finding the causes of, effective treatments for, and ways to improve early detection of, pancreatic cancer.

As part of this alliance, a research team at Garvan, working as part of the Australian Pancreatic Cancer Genome Initiative (APCGI), is currently applying genomic data to unlock the molecular biology of pancreatic cancer, to develop new cancer treatments tailored to individual patients. This branch of ‘personalised’ medicine, also known as genomic medicine, treats each cancer in an individualised manner; the location of the cancer becomes less important, and researchers focus more on the actual behaviour of that specific cancer.

Another Garvan research team is using cutting-edge nanotechnology imaging to pinpoint the molecular drivers of pancreatic cancer, in order to stop it from spreading.

To mark Pancreatic Cancer Awareness Month, and World Pancreatic Cancer Day on 16th November, I’d like to encourage you to learn as much as you can about this terrible disease, and to donate what you can to the amazing researchers at Garvan who are making great strides towards better detection, better treatments, and better survival rates for people with pancreatic cancer.

How you can influence the future of medical research

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Philanthropy – that is, the giving of time, influence, information, resources and/or money by organisations or individuals – underpins much of the medical research undertaken in Australia at any given time. While the Australian Government provide funding for medical research, there is fierce competition for the available dollars. This funding can also be restrictive, particularly for those researchers pushing the boundaries and challenging the traditional practice.

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It is the generous donations researchers receive from philanthropic organisations and individuals, trusts and foundations, as well as corporate partnerships, that allow them to pursue research avenues that might be considered too ‘out of the box’ to be eligible for Government funding. Without this generosity, it would simply not be possible for researchers to have made the astounding progress they have made in the fight against so many diseases and health conditions. It is only through pushing the envelope and researching areas that haven’t been researched before, that we can make real scientific breakthroughs.

Australian researchers have been world leaders in breaking new ground in the understanding and treatment of hundreds of diseases, improving and saving the lives of hundreds of thousands of people over that time. Diseases researched in Australia include cancer, metabolic diseases like diabetes and obesity, neurological diseases, osteoporosis, immunological diseases and many more.

Many of the major breakthroughs made in the country were funded by private donations. Donations, that allow scientists to continue contributing to the bank of knowledge which will ultimately lead to earlier diagnosis, better disease management, new therapies, and prevention and/or cure of many diseases.

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