Supporters at a Neuroendocrine Cancer Awareness Network walk.

The Neuroendocrine Cancer Awareness Network (NCAN) was founded in 2003 in New York (U.S.) after founder Maryann Wahmann was diagnosed with a rare neuroendocrine (NET) cancer. Maryann and her husband, Bob, began their mission to educate and support the NET community as a whole. Since its beginning, NCAN has produced more than 60 patient education conferences, formed and supported 28 NCAN chapter support groups, and has sent out 18,000 patient information packets free of charge. NCAN has many exciting projects up and coming.

Pancreatic Neuroendocrine Tumors (PNETs) are neuroendocrine tumors that start in the pancreas. Although a PNET patient has a primary tumor in the pancreas, they are often lost in where to find support among their pancreatic tumor peers due to the significant difference between neuroendocrine tumors and other pancreatic tumors. Neuroendocrine tumor advancement is often slower than other pancreatic tumors, which, in turn, requires a more lifetime approach for positive treatment outcomes, including being seen by a NET specialist.

NCAN is working to bridge this gap as part of the WPCC for the betterment of education and support that is much needed in the pancreatic tumor community. We know you share our passion for patients and having the most up-to-date information available to guide those who reach out for much-needed support in the difficult diagnosis of cancer.

Coalition members pose for a group shot. Nearly 50 organizations attended the WPCC meeting this year.

Nearly 50 organizations from across the world convened in Coral Gables, Fla., May 7-9, 2019 for the fourth annual World Pancreatic Cancer Coalition meeting — the largest international assembly of pancreatic cancer patient advocacy groups.

The meeting was inspiring for everyone in attendance with a focus on creating tangible change for the world’s toughest cancer. It served as an enjoyable reunion for Coalition members who had attended before, as well as a chance for new members like Pancreatic Cancer Awareness Gibraltar and Elvin Howard, Sr. Pancreatic Cancer Advocacy Foundation to meet other pancreatic cancer organizations for the first time. The meeting emphasized the collaborative nature of the Coalition and the willingness for all the member organizations to work together and push for progress.

“No one is going to get the job done alone,” said Julie Fleshman, JD, MBA, WPCC chair and president and CEO of the Pancreatic Cancer Action Network (PanCAN). “It’s only if we work together that we will accelerate progress…that’s what the Coalition is all about.”

The Coalition meeting served as an opportunity to lead active discussions on many topics including science, research, patient support, clinical trials and raising awareness.

The first day was packed with discussions and presentations highlighting important areas for tackling the disease on a global scale. Coalition members attended a general session focusing on the Science of Pancreatic Cancer: A Global Perspective as well as hands-on workshops. The key areas covered in the workshops included supporting pancreatic cancer patients, understanding clinical trials and media training. Members also heard from winners of Celgene’s ImpactPANC awards. Awardees from 2017 provided an update on their projects which focused on raising awareness of pancreatic cancer. Awardees from last year presented their winning projects and accompanying poster boards on supporting the needs of caregivers in pancreatic cancer.

The second day was focused on member to member engagement, as well as planning for World Pancreatic Cancer Day, which will take place on Nov. 21 this year.

“Sharing best practices and new learning through the WPCC members is crucial to improve patient outcomes in this disease,” said Jenny Isaacson, vice president of strategic partnerships for PanCAN and one of the meeting organizers. “The more we come together and share, the faster we’ll accelerate progress.”

Thank you to our World Pancreatic Cancer Coalition sponsors Celgene, AstraZeneca, Erytech, Novocure, Servier, TriSalus, Halozyme, Ipsen and TYME.

The Avner Pancreatic Cancer Foundation’s “Put Your Foot Down” Melbourne walk in May draws a large crowd of supporters.

The Avner Pancreatic Cancer Foundation began as Avner’s Fund after co-founder Avner Nahmani was diagnosed with the disease in 2007. He and his wife, Caroline, had the goal of raising $1 million for pancreatic cancer research, and although Avner passed away late in 2008, this goal was reached within two years.

Fast forward to 2019 and more than 10 years of incredible support from many generous corporate and community supporters, the now Avner Pancreatic Cancer Foundation has raised more than $10 million and has been a driving force for pancreatic cancer awareness in Australia. It is the only charity in Australia exclusively dedicated to pancreatic cancer.

The Foundation has committed more than $7 million toward 22 medical research projects at Australia’s leading universities and research institutions, funding some of the nation’s most talented researchers in their work to fight the disease.

This is the most significant contribution to pancreatic cancer research from a non-government agency and has been made possible entirely through the support of community and corporate fundraisers.

2019 is already a landmark year for the Foundation.

It recently released a report to the Australian government called, “Pancreatic Cancer: The Cancer of our Generation,” which highlights the traditional lack of action supported by the dire statistics around the disease. Importantly, this report provides a way forward. An awareness campaign will build a groundswell of support that will be used to call on the government to allocate $52 million in funding to further research and improve patient support.

These funds will be dedicated to changing the game for the disease and those it affects across the country. This includes a comprehensive medical research strategy, the creation of a national network of excellence and a dedicated patient support hub, which will be launched nationally later in 2019.

Global support and awareness for the disease is important to ensure a coordinated and unified approach across the globe, and the Foundation looks forward to working with the World Pancreatic Cancer Coalition and member organizations to help achieve this.

Learn more about the Avner Pancreatic Cancer Foundation at https://www.avnersfoundation.org.au/

Project Purple is a Connecticut-based national nonprofit dedicated to providing financial aid to pancreatic cancer patients and donating research grants to centers with a focus on early detection.

Today, the charity is the No. 1 provider of patient financial aid in the pancreatic cancer space, paying out $100,000 to 152 patients and families in 2018. The nonprofit also donated $1.377 million in research grants last year.

Project Purple started out as a running-focused nonprofit but has since grown to include other fitness activities and events in order to fundraise. This fast-growing charity has come a long way since it was founded in 2010.

Chief Executive Officer and Founder Dino Verrelli first encountered pancreatic cancer when his father was diagnosed with the disease in 2008. Through this experience, Verrelli learned of the heavy financial burden that fighting pancreatic cancer can place on patients and families.

Chief Executive Officer and Founder of Project Purple, Dino Verrelli

During his father’s fight, Verrelli used running as a positive outlet and a form of meditation. He decided to start Project Purple to provide that positive experience to others, raise money for research, and ease the financial stress of fighting for as many patients and families as possible. Shortly before losing his father in 2011, Verrelli pledged to run 13 half marathons in 13 months and continued to sign up for races long after.

As the charity grows, running remains a focus for Project Purple. In total, Project Purple’s 1,161 runners combined for 13,327 miles in 2018. The organization plans to continue improving by branching out into other fitness fields and events.

With the help of the WPCC community, Project Purple will continue to strive toward a world without pancreatic cancer while demanding better for patients and their families.

If you are interested in fighting back against pancreatic cancer and supporting Project Purple, visit ProjectPurple.org or follow them on Facebook and Instagram.

Korean Pancreatic Cancer Network (KPCN) was founded in 2015 by pancreatic surgeons in Korea. The organization’s leaders have come to realize that fighting pancreatic cancer in hospitals and operating rooms is not enough. Public awareness of pancreatic cancer in Korea remains low, making the patients’ and doctors’ struggle against pancreatic cancer a lonely one. KPCN is determined to make the fight against pancreatic cancer in Korea everybody’s fight.

To accomplish this goal, the organization began to take small steps inspired by the World Pancreatic Cancer Coalition (WPCC). It held its first World Pancreatic Cancer Day campaign in November 2015 and has done so every year since. Along with the main campaign event, KPCN encourages hospitals across the nation to give lectures on pancreatic cancer to patients and the public to spread knowledge and increase awareness. Every year, about 35 hospitals participate in this campaign.

As of today, KPCN is a small organization working with other academic societies to raise pancreatic cancer awareness to patients and the public. Also, the campaign is relatively small compared to other cancer campaigns, such as the pink ribbon campaign. However, KPCN is only at the very beginning of its journey and will continue to make small steps. Next year, KPCN will again organize its World Pancreatic Cancer Day campaign and is confident that this every small step will increase the awareness of pancreatic cancer in Korea. KPCN looks forward to working closely and collaborating with WPCC and expanding activities in Korea.