Organizations Around the World Create Change for Pancreatic Cancer

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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.

 

Member Profile: Ron Foley Foundation

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The Ron Foley Foundation, based in Connecticut, USA, was established by Barbara Foley in 2010 in memory of her husband Ron Foley, who died of pancreatic cancer in 2005.

 

The mission of the Foundation is to alleviate human suffering caused by pancreatic cancer. The Foundation focuses its efforts on three areas: funding scientific research leading to the early diagnosis, improved treatment and ultimately a cure for pancreatic cancer; raising awareness of this terrible disease among medical professionals and the general public; and providing financial aid directly to needy pancreatic cancer patients and their families.

The Foundation provides seed funding for early-stage medical research and sponsors multiple pancreatic cancer health education seminars for the public, as well as lectures and symposia about the disease for medical professionals, students and researchers.

The relationships the Foundation has established through the WPCC have helped efforts to develop a caregivers network. The Foundation is also formalizing a consortium among pancreatic cancer medical professionals and research facilities within Connecticut and surrounding states.

Established in 2012, the Foundation’s “Ron’s Rescue” program addresses the dire financial circumstances of pancreatic cancer patients in New England, New York and New Jersey, who can no longer work while undergoing treatment. Healthcare professionals help identify needy patients and assist them through a streamlined application process. Grants are given to individuals following an expedited review of their application. Speed is critical in getting aid to patients who are often unable to pay rent or afford adequate food, clothing and other life essentials. We encourage WPCC members to contact the Foundation to learn more about the program or for any suggestions to improve Ron’s Rescue. And we ask the WPCC for help in addressing the financial needs of working-class pancreatic cancer patients.

The WPCC is a perfect forum for all of us to share ideas and to work together as we all create opportunities and the HOPE to change the direction of those affected by pancreatic cancer.  The Ron Foley Foundation looks forward to deepening our relationships with members for the invaluable exchange of ideas, procedures and best practices.

For more information about the Ron Foley Foundation, please visit www.ronsrun.org and contact info@ronsrun.org.

Member Profile: Avner Pancreatic Cancer Foundation

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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/

Member Profile: Europacolon Slovenija

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Members of the EuropaColon Slovenija board of directors

EuropaColon Slovenija, founded in 2007, is part of an umbrella organization called Digestive Cancers Europe. It is located in Ljubljana, the capital of Slovenia. As evident from the name, the organization began with a focus on colorectal cancer patients, but today all digestive cancers are included, with a particular focus on pancreatic cancer.

Pancreatic cancer has the lowest five-year relative survival rate at a mere 4 percent, having remained the same for the last 40 years. That is the main reason the organization has started activities in this area.

Its main goal is to raise awareness within the general public about this cancer, in hopes that more patients can be diagnosed in early stages with a better chance of long-term survival. Also, educating healthcare professionals ranks high among the priorities of EuropaColon Slovenija.

As a part of the World Pancreatic Cancer Coalition, EuropaColon Slovenija is eager to gain knowledge and share ideas with other member organizations about awareness campaigns, fundraising, patient support programs, pancreatic cancer care, etc.

A nationwide awareness campaign is currently in development that will include the Demand Better theme. The organization’s leaders would appreciate hearing the experiences and suggestions of others in order to be more successful.

Member Profile: Project Purple

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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.

Member Profile: Pancare Foundation

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Pancare Foundation in Australia was established in 2011 to improve patient outcomes in a variety of ways. Its flagship event is the Walk for Hope

Born out of a desire to see better outcomes for people fighting pancreatic cancer, Australia’s Pancare Foundation was established in 2011 by prominent Melbourne-based surgeon Dr. Mehrdad Nikfarjam.

“I could see that improving outcomes was dependent on better research,” Dr. Nikfarjam said. “Facing a pancreatic cancer diagnosis can be an incredibly isolating experience — our hope is that by connecting with Pancare, no one has to face it alone. Pancare was established to be a voice for those affected by the cancer — by advocating for new treatments and early detection, supporting research and good clinical trials in addition to patient support services.“

In Australia, the five-year survival rate is just 8.7 percent — a figure which constantly drives the Pancare team to take up the challenge to deliver better outcomes.

In 2019, Pancare will expand and launch key services that will impact more Australians fighting the disease. The foundation supports a Familial Pancreatic Cancer Screening program with two major hospitals for individuals recognized as being at higher risk of developing the disease. The goal is to expand this service to other major hospitals throughout the country. Also launched will be a Pancreatic Cancer Specialist Nurse to provided dedicated support from diagnosis and throughout treatment for people fighting the disease.

Also in store for 2019 is the foundation’s flagship event, the Walk for Hope, taken national — giving people impacted by pancreatic cancer a chance to walk in hope for a better future.

Member Profile: Korean Pancreatic Cancer Network

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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.

Member Profile: Pancreatic Cancer Asociation In Spain

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The Cities Race against Pancreatic Cancer is a fundraiser for Pancreatic Cancer Asociation in Spain.

Pancreatic Cancer Asociation in Spain began in January 2015 in memory of the late Carmen Delgado and Olga Lamarca, both of whom battled pancreatic cancer.

It is the first Spanish and Hispanic-speaking association exclusively dedicated to this disease.

All the members collaborate in an altruistic way.

The Asociation has three objectives: to gather funds for research of the disease, to inform and support patients and their relatives, and to raise awareness and consciousness about effects and the need to palliate the disease.

Its source of funding mainly comes from The Cities Race against Pancreatic Cancer. The first race took place in Alicante in 2015, and then Madrid joined. Now it takes place in three Spanish cities, and Milan and Bologna in Italy have also joined.

These funds are entirely dedicated to research grants. With our grants we have already donated 200.000 euros to promising research projects, and some are already delivering results.

To support patients and relatives, the Asociation has created two types of online gatherings. Some are exclusively for patients, where they can talk freely about how they feel. Other sessions are for both patients and relatives, where they can ask questions to a collaborating oncologist.

Another objective is to help patients with their nutrition habits. We have developed a food and healthy Lifestyle Guide that we provide free of charge to patients, relatives and supporting professionals, which has become fundamental for many of them.

Since 2016, the Pancreatic Cancer Asociation in Spain has been a member of the World Pancreatic Cancer Coalition (WPCC). They recently participated in the annual meeting of WPCC in Miami, Fla.

In the words of Asociation president Cristina Sandin, “We have to gather forces and work in a coordinated manner in the world to achieve greater awareness of the disease to gain on early diagnosis and better treatment, considering that 95 percent of the patients do not survive due to late diagnosis and the tumor´s resistance to conventional treatments available.

“To belong to the WPCC is a great satisfaction. It makes us feel that we are not alone and that together we can make a difference.”

Member Profile: Nadia Valsecchi Foundation

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Nadia Valsecchi Foundation in Italy was established in 2015. Pictured: A fundraiser event.

Nadia Valsecchi Foundation is an Italian organization established in 2015 by the Valsecchi family in memory of Nadia, who lost her battle against pancreatic cancer in 2013.

The first mission of the foundation is to support research by establishing scholarships for young investigators, which are leading promising science in pancreatic cancer.

The second mission is to create awareness about the disease through the organization of national meetings. General practitioners, scientists, oncologists, surgeons and patients periodically convene to discuss the state of the disease and to develop strategies to help patients with pancreatic cancer. For the past three years, the foundation co-organized World Pancreatic Cancer Day in Italy together with the pancreatic cancer organizations active in our territory.

The third mission is to support the needs of patients during their journey. Recently the Foundation launched a new patient program called PEP, Pancreas Energy Program, where patients participate in physical activities followed by a personal trainer and a dietary program supervised by a nutritionist. The entire program is coordinated by a nurse navigator, who records the data of each patient and organizes their weekly activities.

Since 2017, Nadia Valsecchi Foundation has been a member of the WPCC. Recently they took part in the WPCC annual meeting in Miami. A representative of the Foundation said, “The Coalition helps our organization prioritize the needs of patients, and through their campaign we create awareness about pancreatic cancer with a unique voice all over the world. Therefore, we regularly use the #demandbetter theme for our initiatives and fundraising events.”

Member Profile: Pancreatic Cancer UK

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The vision of Pancreatic Cancer UK is that everyone with pancreatic cancer survives to live long and well.

Each year, Pancreatic Cancer UK helps thousands of people across the UK by providing information and support, funding world class research and campaigning to improve the quality of care for people with pancreatic cancer. Its vision is that everyone with pancreatic cancer survives to live long and well.

Pancreatic Cancer UK is the longest running pancreatic cancer charity in the UK. Founded in 2003 by Susan Ballard a few years after she lost her husband to pancreatic cancer, it was registered as a charity in 2006.

Pancreatic Cancer UK provides expert, personalized support and information through its website, a range of publications and via its Support Line — the only Support Line dedicated solely to pancreatic cancer in the UK.

The organization funds innovative research across the UK to find the breakthroughs that will change how we understand, diagnose and treat pancreatic cancer.  A number of projects are well-underway, and the organization also recently announced the awarding of its largest-ever research grant, the Pancreatic Cancer UK Grand Challenge. The recipients are Professor Nick Lemoine, a leading pancreatic cancer expert, and a team of researchers at Barts Cancer Institute and King’s College London. Together they are focusing on an extremely promising area of research called immunotherapy, building on 20 years of research in the field.

Pancreatic Cancer UK.

In addition, Pancreatic Cancer UK campaigns for change; for better care, treatment and research; and for pancreatic cancer to have the recognition it needs. They do this through major campaigns such as Pancreatic Cancer Awareness Month, and they Demand Better for patients and their loved ones on a daily basis. For instance, by working with the pancreatic cancer community, their Promoting Innovative Practice initiative seeks to identify new developments in care and treatment that can potentially improve patients’ outcomes. They will highlight and share these examples among health practitioners and call for their adoption across the NHS in the UK.

The WPCC was established to bring about transformative change for those affected by pancreatic cancer. This is very much aligned with Pancreatic Cancer UK’s mission, so they are delighted to be a part of that change both in the UK and on a global scale.