World Pancreatic Cancer Coalition Presentation

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Today, Jess from #PurpleOurWorld was fortunate enough to share the #PurpleOurWorld story at the inaugural World Pancreatic Cancer Coalition meeting. She also spoke about the formation of the Australian Pancreatic Cancer Alliance and how it’s going to help further the pancreatic cancer cause in Australia. Here’s her presentation (Slides are available to download here).

Good afternoon and thank you for the opportunity to speak today. My name is Jessica and I’m the Co-Founder of #PurpleOurWorld. I’m also one of three representatives for the Australian Pancreatic Cancer Alliance here today.

I’m here to talk mainly about the Alliance, however for you to fully understand the Australian collaboration, it’s necessary that I give you a bit of background to #PurpleOurWorld.

In March 2013, my mother Rochelle Goulburn was diagnosed with pancreatic cancer. Sixteen months, 13 rounds of chemotherapy, 10 intensive days of radiation, multiple drains to remove excess fluid, multiple hospital stays, and many family milestones later, including my wedding, my mum passed away at home surrounded by almost 30 members of our extended family. She was only 57 years old.

That was August 2014. By October, our family had decided we needed to do something to raise awareness of the disease that had taken our loved one too soon.

As a family, we were completely blindsided when my mum was diagnosed. We knew very little about the pancreas itself, never mind pancreatic cancer. So we set out to learn as much as we could, while at the same time trying to get our community involved with some awareness efforts.

Our initial campaign was simple, wear something purple on World Pancreatic Cancer Day and share a picture on social media, using the hashtag #PurpleOurWorld. Our overwhelming success proved the power of social media. With only three weeks and a shareable message, we were amazed by how many people took part, including numerous journalists, and sports and media personalities. Our little backyard operation to honour our wife, mum, sister and nana had turned into much more than a simple gesture. It went global. So we decided we had to take #PurpleOurWorld to the next level.

We began talks with prominent Australian personalities, journalist Tracey Spicer and Australian football player, Robbie Farah, both of whom lost their mothers to pancreatic cancer. Robbie’s grief in particular was very public as he lost his mum in the middle of the football season. They became our inaugural ambassadors.

Well, while 2014 was an incredible success, 2015 went above and beyond. We secured partnerships with Australian charities, received national coverage when two football teams wore #PurpleOurWorld socks during their game against each other and managed to get major corporate organisations to share our message. These included Gelato Messina, who created a flavour sold across Australia and in Las Vegas, Australian airline Qantas, one of the top four Australian banks ANZ and one of the top five private hospital operators in the world, Ramsay Health Care. This year, we are planning to go bigger and better again and we’re already in talks with even more corporates to help champion the pancreatic cancer cause.

In fact, this week we are launching the #PurpleOurWorld app, which is shareable by text message, email or social media so we can engage with our followers on another level.

What we count as one of our biggest achievements last year, however, was helping to form the Australian Pancreatic Cancer Alliance, which was launched at NSW Parliament House by NSW Health Minister Jillian Skinner.

Together with #PurpleOurWorld, the Alliance comprises of a unique collaboration of organisations and individuals, including the four major charities in Australia who work in the field of pancreatic cancer: the Avner Pancreatic Cancer Foundation, Pancare Foundation, both of which are represented here today, the Garvan Institute of Medical Research and the GI Cancer Institute. Other members include pancreatic cancer activist, Karen Livingstone. The Australian government is also represented through Cancer Australia and Australian media personality and #PurpleOurWorld ambassador, Tracey Spicer is the Patron.

The Australian Pancreatic Cancer Alliance is committed to raising awareness of pancreatic cancer, with a long-term view of supporting much needed medical research into the disease. In Australia, pancreatic cancer is the fifth most common cause of cancer-related deaths. While each organisation carries out its own awareness initiatives and fundraising activities, we work together on some parts of the boarder puzzle.

We meet on a monthly basis, whether via teleconference or in person. A Communications Strategy outlining the opportunities for the Alliance 2016-2020 is being finalised to ensure sustainable activities are developed and delivered while meeting defined objectives, and a yearly timeline has been developed so each organisation is aware of what is happening with the others. This is updated as required. We then share information about each other’s initiatives to broaden the network. Additionally, when we can, we also support each other’s initiatives in person. For example, the Avner Foundation holds fundraising walks throughout Australia and where possible, we go along, taking as many people as we can with us.

The idea is collaboration rather than competition. We strongly believe that by working together, we will be much more powerful, especially when dealing with high profile stakeholders and government bodies.

One of our projects this year is to create a Parliamentary Friends Group for pancreatic cancer. In Australia, this is a way to channel information through to Members of Parliament. The groups bring together politicians from all different backgrounds and political parties, and help raise awareness of community issues. Our hope is that by forming a pancreatic cancer friends group, we can find politicians with an interest in furthering knowledge, awareness and funding for the disease, who will then pass this on to their respective communities.

We feel that the reason the Alliance works so well is that each individual organisation has something new and different to bring to the table, whether it’s awareness, research, clinical trials, patient care or fundraising. Whichever organisation’s initiative is in the spotlight at any given time, largely defines the audience, whether it’s doctors, patients, government officials, families, carers or the public. Generally though, our audience is pretty broad – anyone who will listen.

Less than a year since it’s official launch, and although the Alliance is still in its infancy, we know that as a cohesive group we will be able to achieve a lot more than if we worked individually. Our outlook is positive and we’re determined to make a difference.

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