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

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.

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.

“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.

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.”

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.

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.