Recognizing that there is an urgent need for pancreatic cancer patients to communicate amongst themselves and with the medical community about potentially life-changing non-standard of care treatments and clinical trials, Let’s Win was launched as an initiative of the Lustgarten Foundation in May 2016. Let’s Win www.letswinpc.org is an interactive online community where patients and families can share information and experiences about new, innovative science-driven treatments and learn about the latest research, breakthroughs and clinical trials in the fight against pancreatic cancer.

Let’s Win is designed to:
• Fulfill an unmet need, as pancreatic cancer patients are typically offered one of only a few basic standard of care treatment options, none of which has proven effective long-term.
• Alleviate the countless hours of research a patient experiences when faced with a pancreatic cancer diagnosis by crowdsourcing actionable information and offering it all in one place.
• Connect scientists and patients for the first time, enabling two-way communication that can advance current treatments.

In addition to the My Treatment section, where patients share their innovative treatment stories with the goal of helping other patients, the site includes articles on promising science by leading pancreatic experts, highlights of current clinical trials, a news feed and a comprehensive resource library. 

Let’s Win was founded by the late Anne Glauber, a seasoned communications professional, pancreatic cancer patient and advocate, Dr. Allyson Ocean, Willa Shalit, a communications and digital marketing executive, and the CEO of the Lustgarten Foundation, Kerri Kaplan.

“We are proud to be a member of the WPCC, said Cindy Gavin, founding executive director, and collaborate with the pancreatic cancer community in our shared passion and commitment to help patients and advance the science for this deadly disease.”

Matt Alsante, Executive Director, National Pancreas Foundation, at a hero-themed fundraiser.

The National Pancreas Foundation (NPF) is celebrating its 20th anniversary, having been created in 1997. The NPF was co-founded by Jane Holt, a pancreatitis patient, and Patter Birsic, who lost her sister-in-law to pancreatic cancer. The experiences of both the Holt and Birsic families led to the NPF being the only organization dedicated to all diseases of the pancreas, with a focus on pancreatic cancer, pediatric pancreatitis, acute pancreatitis and chronic pancreatitis.

The NPF mission is to provide hope, with a focus on research, education, advocacy and support for pancreatic cancer and pancreatitis patients and families. To fulfill its mission, the NPF raises funds from which grants are made directly to researchers seeking to resolve the challenging medical problems of pancreatic diseases. A National Patient Registry has been developed for individuals suffering the isolating and debilitating conditions associated with pancreatic disease. The Registry has a patient portal and an institutional partnership component. The NPF also has a program called the Animated Pancreas Patient. This program has animations and expert interviews on all forms of pancreatic disease, including pancreatic cancer and clinical trials. The clinical trials module can be of great benefit to a newly diagnosed patient, as it explains what clinical trials are and the terminology that is used, as well as why they are important to consider – all in an easy to understand format.

The NPF is looking to work with the other organizations of the WPCC in making sure they are aware of its programs, advocating together for greater funds invested toward pancreatic cancer research, and to learn about the programs that are available to pancreatic cancer patients from other organizations.

“We are looking forward to the next WPCC meeting,” said Matt Alsante, executive director, “where we can discuss how we can have a unified voice to not only advocate for pancreatic cancer patients in November, but how we can work together all year long to make sure the voices of the patients and families we represent are being heard.”

It is with much regret that I share that Anne Glauber, the co-founder of our fellow World Pancreatic Cancer Coalition member, Let’s Win!, died yesterday after a three-year battle with pancreatic cancer.  Our Coalition, and the pancreatic cancer community, is stronger today because of Anne’s unrelenting spirit.

Anne co-founded Let’s Win!, a website that shares information about pancreatic cancer treatments and trials that go beyond standard of care.  She also sat on the Lustgarten Foundation Board of Directors and had an extensive professional background as a public relations executive.

Anne’s committed passion to drive change for this disease is a clear reminder of why our joint efforts are so critically important.  Today and always, we celebrate her life along with fellow Coalition members around the world.

Anne, you will be deeply missed.

Julie Fleshman, Chair
World Pancreatic Cancer Coalition

A volunteer helps out at a Pancreatic Cancer Spain event.

Pancreatic Cancer Spain was founded in 2014 as a chapter of GEPAC, the Spanish Cancer Patients Group. Its mission is to ensure that pancreatic cancer patients have timely and affordable access to the best treatment and care available, to improve early diagnosis and to improve the quality of life for all those affected by pancreatic cancer – patients, families, caregivers and relatives.

The organization works in the following areas: advocacy, research, capacity building/education and partnership.

“We guide patients, helping them navigate the healthcare system, and making sure they have access to reference centers and specialized care,” said Patients and Public Affairs Manager Natacha Bolaños, who is also a cancer rehabilitation specialist with Pancreatic Cancer Spain.

“We ensure patients feel empowered to make informed decisions about their treatment and care in part by providing educational resources and programs, facilitating information about diagnosis, new treatments and clinical trials, and by providing psycho-oncological support for patients and their families.”

Pancreatic Cancer Spain represents and defends the interests and rights of pancreatic cancer patients at the national and international level.
The organization advocates to make cancer a priority on the Spanish health policy agenda – it plays an active role in shaping national healthcare policies that affect cancer patients and in creating national laws to satisfy patients’ needs.

“We also call for research on survivorship issues and advocate for better healthcare and social services for patients,” Bolaños said.

She added that the organization was proud to be a WPCC member and hoped to share experiences, knowledge and best practices, as well as establish alliances and common goals.

“I also look forward to learning more about fundraising ideas that can be successfully translated to Europe, since fundraising practices here are much different than in the U.S.”

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The Operation Henry Trust, based in England, was founded in 2001 by David Snelling, who wanted to do something to help pancreatic cancer patients after his father was diagnosed. Upon completing the Santiago de Compestela Walk across Spain to raise money to support patients, he started the charity to address what he saw as a lack of support for those affected by the disease.

Today the Operation Henry Trust focuses on alleviating some of the burden placed on patients and their families after diagnosis. This is typically done by the Trust working directly with service providers to support the patient’s immediate needs that have come about as a result of their diagnosis or treatment.

Sam Foley, charity manager for Operation Henry, said support can include paying for transport to and from hospital appointments or to see loved ones, help with money for new clothes for patients who have lost weight, or help around the home by paying for gardeners or cleaners to do some of the tasks that the beneficiaries are no longer able to do themselves.

The organization has also recently developed a working relationship with Macmillan Cancer Support, in which pancreatic cancer patients with whom Macmillan works are referred to Operation Henry for additional support.

“This is allowing us to reach a great many potential beneficiaries that we would not previously have reached,” Foley said. “We are grateful to Macmillan for providing us with access to more people we can help.”

Foley added that the organization is also proud to be part of the World Pancreatic Cancer Coalition.

“The Trust really values our membership in the WPCC and the opportunities it provides us for working with other pancreatic cancer charities toward our common goals. Increased awareness of pancreatic cancer makes such a difference with the diagnosis and prognosis given to our beneficiaries,” he said.

Associazione Nastro Viola (“Purple Ribbon” Charity) was founded in February 2015 by five people who lost family members to pancreatic cancer.

None of the founding members had ever experienced a disease so devastating or seen their loved ones get sick and worsen so quickly (they survived from one to six months after diagnosis). They decided something had to be done in order to spread awareness. So that is what Associazione Nastro Viola does – raises awareness about symptoms and risk factors in order to promote early diagnosis. They also fundraise to support pancreatic cancer research.

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Associazione Nastro Viola supporters gather for World Pancreatic Cancer Day 2015.

Francesca Mella, vice president of Associazione Nastro Viola, said that they are looking forward to World Pancreatic Cancer Day this year and launching their second annual national awareness campaign this November.

“The campaign is called, ‘Facciamo Luce sul Tumore al Pancreas,’ and we will again request that municipalities across Italy turn public buildings or locations purple. We also aim to get people involved through ‘purple’ events,” she said.

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In addition to awareness campaigns and fundraising events, the organization is currently involved in a national project called “La Salute: un bene da difendere, un diritto da promuovere” (www.salutebenedadifendere.it), focusing on guaranteeing easy access to innovative cancer treatments, clinical trials and early diagnosis for all patients, despite their economic situation. The project is supported by doctors, researchers, Italian charities and politicians who reunite once a year to discuss the project results and plan new activities (the most recent meeting was held in Rome on Sept. 20, 2016).

Mella said that being part of the World Pancreatic Cancer Coalition gives the organization inspiration regarding future campaigns and events.
“We truly feel that working side by side with others will bring outstanding results in the near future. Our main accomplishment would be to see the number of people diagnosed at an early stage increase over the next year so that more lives can be saved.”

PanCAN Japan, headed by President Yoshi Majima and based in Tokyo, was formed in 2006 as an autonomous extension of the Pancreatic Cancer Action Network. Like the U.S.-based Pancreatic Cancer Action Network, PanCAN Japan’s mission is to advance research, support patients and create hope. It does so by offering patient services as well as leading advocacy efforts to increase pancreatic cancer research funding in Japan.

Pancreatic cancer is the fourth leading cause of cancer-related death there.

Yoshi Majima, president of PanCAN Japan

Yoshi Majima, president of PanCAN Japan

“The reason I do what I do is because of my sister,” Majima said. “She was diagnosed with stage IV pancreatic cancer in the summer of 2004, and it was then that I learned about the five-year survival rate. She survived 18 months.”

Majima got information online about the disease and treatment options from the Pancreatic Cancer Action Network – nothing existed in Japan. He was living in California at the time, so he arranged a meeting with CEO Julie Fleshman to discuss what could be done back home to support patients. Both were hopeful that a collaboration could help accelerate a change in patient outcomes.

“A natural first step was for me to take the Pancreatic Cancer Action Network’s patient education materials and translate them into Japanese, because my professional background included translating and selling educational materials,” he said.

Once founded, PanCAN Japan got early funding through a grant from a pharmaceutical company that enabled it, in conjunction with local disease specialists, to host educational seminars for patients and caregivers throughout the country. Today, the organization works with medical institutions in different regions to disseminate patient materials.

Yoshi Majima with Ralph Hruban MD, Johns Hopkins University School of Medicine.

Yoshi Majima with Ralph Hruban MD, Johns Hopkins University School of Medicine.

Because PanCAN Japan employs such a small team (just Majima and one other full-time employee; volunteers help when they can), they’re only able to take calls from patients three days a week for three hours a day. When Majima isn’t fielding patient calls, he is working to encourage the government to fund more pancreatic cancer research, bring more advocates to the cause, create a survivor program (through the Japanese version of the American Association of Cancer Research) and encourage the creation of more clinical trials. In fact, he said his proudest achievement to date was being instrumental in reducing the approval time for first-line pancreatic cancer drugs from five years to two.

PanCAN Japan is gearing up for its fourth annual fundraiser walk – PurpleStride Tokyo, which will take place on Nov. 13. About 500 people are expected. Two additional walks are also slated in the cities of Mie and Hiroshima.

In 2012, Majima himself had a pancreatic cancer scare when physicians discovered stage 0 carcinoma in situ through a CT scan. He had his pancreas removed and today is doing well.

He said he is pleased to be a member of the World Pancreatic Cancer Coalition and that he hopes to see the creation of international clinical trials driven by the WPCC. “As a global coalition, we can paint the big picture for pharma companies,” he said.

He added, “The great thing about the WPCC overall is that we members don’t need to spend time reinventing the wheel – in many cases, solutions are already here for us to take advantage of and learn from.”

The Danish pancreatic cancer patient organization Pancreasnetvaerket i Danmark came into being in the spring of 2015, upon the initiative of Mr. and Mrs. Niels-Erik and Gunna Olsen. When Olsen was diagnosed with pancreatic cancer in the fall of 2014, he and his wife quickly realized there was an urgent need for an organization that could distribute information about this rarely known disease and provide support for patients and their caregivers. Therefore, they took upon themselves the Herculean task of organizing the first nationwide pancreatic cancer patients’ conference in Denmark, which took place at the University Hospital in Odense in May 2015. More than 50 patients and caregivers from across the country attended, listening to presentations from leading Danish surgeons and oncologists.

The Pancreasnetvaerket i Danmark team at a rally at Copenhagen Central Station on World Pancreatic Cancer Day 2015.

The Pancreasnetvaerket i Danmark team at a rally at Copenhagen Central Station on World Pancreatic Cancer Day 2015.

Olsen passed away shortly after this successful event. But another pancreatic cancer patient, Inger Marie Amdi, stepped in, and with the backing of a small steering committee, she officially founded the network and initiated the organizing for the Danish events on World Pancreatic Cancer Day on Nov. 13, 2015. A rally at the Central Station in Copenhagen reached out to thousands of train passengers that morning, and later in the day, 65 patients and caregivers gathered at the University Hospital in Herlev to hear presentations from leading Danish surgeons, oncologists and professors in palliative care from all the major Danish hospitals.

Once again, the Danish organization was hit hard when Amdi passed away in February 2016. But the steering committee regrouped, adding new members and continuing the much-needed organizing. Thus, Pancreasnetvaerket i Danmark was represented by Poul Ejby Rasmussen at the inaugural conference of the World Pancreatic Cancer Coalition in Orlando, Fla., in May 2016.

Rasmussen said that today, the organization is confronted with three major tasks.

“First and foremost is the continued recruitment of new members – not an easy task, by the nature of the disease we have in common,” he said. “Next, we must continue to give support and counselling to both patients and caregivers. And finally, despite our limited numbers and resources, we are being called upon by the Danish health authorities to give our input into the ongoing reorganization and improvement of pancreatic cancer care in Denmark.

“So, the plate in front of us is more than full.”

Poul Ejby Rasmussen of Pancreasnetvaerket i Danmark speaks at the inaugural conference of the World Pancreatic Cancer Coalition in Orlando, Fla., in May 2016.

Poul Ejby Rasmussen of Pancreasnetvaerket i Danmark speaks at the inaugural conference of the World Pancreatic Cancer Coalition in Orlando, Fla., in May 2016.

Rasmussen added that he was extremely grateful to have the backing of the WPCC, saying: “We cannot increase public awareness about this dreadful disease all by ourselves, not to mention raising funds for much-needed research. For this very important work, we rely upon the WPCC.”

The greatest achievement of Pancreasnetvaerket i Danmark so far?

“That we are still here, trying to help pancreatic cancer patients and caregivers in any way we can,” Rasmussen said.

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Pancreatic Cancer Network South Africa was established in 2014 in honor of Founder Carla Bailey’s late mother and uncle, who both fought the disease bravely. She founded the organization to offer hope and support to those fighting pancreatic cancer. “Before our organization was established, no light was shed on this disease and we knew little about it. I felt that people needed to know…to stand a better chance at survival,” Bailey said.

The organization raises awareness through events, such as an annual golf day, cycling events and World Pancreatic Cancer Day. They also educate the public on early symptoms and risk factors associated with pancreatic cancer as well as offer survivors a platform to communicate with other survivors and share information. “Our reach has gone as far as Namibia and has proven that survivors on the African continent needed a ‘home,’” Bailey said.

Pancreatic Cancer Network South Africa is currently working with the City of Cape Town Employee Wellness Programme, and staff travels to a different depo/area each week where they meet between 60 and 600 employees to talk about pancreatic cancer.

The organization recently hosted its first pancreatic cancer survivors support group meeting in South Africa and Africa. They hope to expand to having a support line in South Africa, as they have found that survivors who are in treatment aren’t sure whom to contact should an emergency arise, if they are experiencing any side effects or just need advice.

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The organization also provides care packs for survivors, which include a branded bag, purple towel/blanket, BPA-free water bottle, inspirational book, journal and healthy snacks, as well as information about the disease.

Bailey said that she would love to have access to information, materials and training from other WPCC member organizations, as well as access to any volunteer and nurses training modules to implement in South Africa.

“Not reinventing the wheel would be great!” she said.

This year on World Pancreatic Cancer Day, Bailey said the community looks forward to turning iconic sites in South Africa purple and building relationships with other advocacy organizations to drive change in South Africa and Africa.

The first-ever World Pancreatic Cancer Coalition (WPCC) gathered for its inaugural meeting in Orlando, Fla., May 10-14, bringing together over 50 Coalition members from nearly 20 different countries from around the globe.

Though the inaugural Coalition meeting has come to a close, member organizations have begun to set their sights on future activities, including the second World Pancreatic Cancer Coalition meeting in 2017 and this year’s World Pancreatic Cancer Day (WPCD).

In other news, 10 individuals have been appointed to the WPCC Steering Committee, and eight others have been asked to serve on the WPCD Committee. Both groups will be working hard in the coming months to develop plans for various activities.

The WPCC Committee is also excited to announce that next year’s meeting will take place in Montreal, Canada, May 2-5, 2017.

Meanwhile, the WPCD committee is finalizing plans for the big day on Nov. 17, 2016. WPCC and WPCD Committee members anticipate that this year’s WPCD campaign will be even bigger and better than the 2015 campaign that had an estimated reach of over 1,000,000.

Congratulations to the first World Pancreatic Cancer Coalition Steering Committee members:

And to the first World Pancreatic Cancer Day Committee members:

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