Member Profile: EuropaColon Slovakia

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EuropaColon Slovakia was founded in May 2007 as a nonprofit organization for patients with colorectal carcinoma and their families. Epidemiological data for cancer and years of experiences with patients motivated the organization to expand its target, and in 2014, EuropaColon Slovakia joined the European Pancreatic Cancer Multi-Stakeholders Platform. At that time, the organization also established a new alliance, “Say No To Pancreatic Cancer” in Slovakia. The mission is to spread awareness and evidence-based facts about pancreatic cancer prevention, as well as the benefits of early detection. The organization lobbies for availability of diagnosis and new treatments for patients with pancreatic cancer.

For those affected by cancer, the organization provides a helpline and special personal psychosocial support in patient support centers in two major oncological institutes in Slovakia. Its volunteers, former patients, are professionally prepared to support newly diagnosed patients in those centers two times per week and mostly discuss psychological problems, social issues, treatment, side effects and nutrition after diagnosis.

The organization connects all stakeholders — patients, healthcare providers, medical and pharmaceutical companies and politicians to lobby for patients´ rights and importance of prevention and early detection.

A EuropaColon Slovakia patient support center in action

Member Profile: The Swiss Pancreas Foundation

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The Swiss Pancreas Foundation (SPF), headquartered in Bern, Switzerland, is an independent non-profit providing help for those suffering from pancreatic diseases. Founded in 2007, SPF has the following goals:

  • To advise and inform the Swiss population on the growing problem of pancreatic disorders and pancreatic cancer. To provide the many people affected, along with their treating doctors, with missing information on specialists, along with centers specializing in pancreatic treatment.
  • To support research projects into pancreatic illnesses.
  • To increase knowledge about pancreatic ailments by organizing medical events and congresses.

To fulfill these goals, the SPF regularly organizes events open to the public, grants scholarships for young health professionals and provides financial support to different research projects.

Most importantly, and at the heart of the SPF, is the World Pancreas Forum. This international scientific meeting, in its third year, will take place in Bern Feb. 5-7, 2020. New research pertaining to the treatment of pancreatic neoplasia is presented. In the future, the World Pancreas Forum is scheduled to take place as an annual meeting alternating between China, the United States and Switzerland.

Member Profile: Inspire2Live

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Inspire2Live (I2L), located in the Netherlands, is an international movement founded in 2011 by the people who also started charity events like Alpe d’HuZes, currently Holland’s biggest charity action. All these charities are targeted toward one single goal: getting cancer under control. To achieve this, the organization also strives to change and improve the way global cancer research is organized and executed. I2L is a platform consisting of approximately 30 patient advocates, bringing together patients, doctors, scientists, the industry and government to work on the challenges to get cancer under control. I2L works for all cancers, but since pancreatic cancer is still one of the deadliest cancers, it is of special interest. One of I2L’s goals is speeding up the process for new therapies in pancreatic cancer. Of particular focus is whole genome sequencing for all pancreatic cancer patients to see whether their tumor cells have actionable mutations for which precision medicine is available and the right choice of targeted treatment. With its membership in the World Pancreatic Cancer Coalition, I2L hopes to expand its network and find new collaborations for common goals.

Member Profile: #PurpleOurWorld

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Some of the #PurpleOurWorld family with Ambassador Tracey Spicer and Sydney newsreader Peter Overton in front of the Opera House, which turned purple for World Pancreatic Cancer Day!

 

#PurpleOurWorld was founded in October 2014, just weeks before the first World Pancreatic Cancer Day (WPCD). It was founded in honor of wife, mother and sister Rochelle Goulburn, who passed away from pancreatic cancer in August 2014 after 16 months of treatment. When Goulburn was diagnosed, her family found there was little awareness of the disease, so they set about to change that, working alongside their charity partners in Australia — the Avner Pancreatic Cancer Foundation, Garvan Research Foundation, GI Cancer Institute and Pancare Foundation, as well as several Ambassadors — media personality Tracey Spicer and National Rugby League player Robbie Farah.

The organization’s founders realized early on that most people absorb their information via social media, so that’s where they focus their energy — raising awareness with followers on Facebook, Instagram and Twitter. They work with corporate organizations to further the #PurpleOurWorld message on their internal communication systems and some of them, such as Westfield, Ramsay Health Care and Gelato Messina, have taken their message mainstream as well, by publicly supporting the organization in Australia.

Some of the #PurpleOurWorld family on World Pancreatic Cancer Day 2018.

#PurpleOurWorld believes in collaboration and that speaking with one coordinated voice is the only way to get the message across. Through WPCC membership, #PurpleOurWorld appreciates the collaboration that happens between the member organizations and idea-sharing that further strengthens the collective message.

With the sun rising there first, Australia once again looks forward to kicking off the global WPCD campaign with a bang!

Member Profile: WINGS OF HOPE FOR PANCREATIC CANCER RESEARCH

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From left: Cathy Noon, pancreatic cancer survivor; Dr. Marco Del Chiaro, Division Chief, Surgical Oncology Clinical Director, Hepato-Pancreatic-Biliary Program, University of Colorado; Maureen Shul, WINGS OF HOPE founder; and Dr. Richard Schulick, Director, University of Colorado Cancer Center.

Maureen Shul founded WINGS OF HOPE FOR PANCREATIC CANCER RESEARCH in 2012 in Colorado (U.S.) after losing her brother and mother to pancreatic cancer within months of each other. Driven by grief and motivated by how woefully behind pancreatic cancer is in terms of research funding, early diagnostic methods and effective treatments, Shul’s goal was to form an all-volunteer organization dedicated to raising funding for pancreatic cancer research.

In 2013, WINGS OF HOPE entered into a formal partnership with the University of Colorado Cancer Center, whereby a collaborative effort was established to raise awareness and funding for pancreatic cancer research taking place at this medical center. Through annual golf tournaments and fundraising benefits, WINGS OF HOPE awards research grants annually to physicians and researchers working specifically on pancreatic cancer-related projects. This seed funding is instrumental in allowing those smaller, innovative projects to rapidly translate to the clinic and move forward in receiving much larger grants on a national scale.

In 2019, grants were awarded to projects looking into radiation therapy and the mechanisms that cause it to sometimes contribute to the aggressive increase of fibrosis, leading to resistance to chemotherapy and radiation.

WINGS OF HOPE looks to the World Pancreatic Cancer Coalition for the latest information on research developments through its network of nonprofit organizations and its annual conference.  It is through this positive and collaborative network that WINGS OF HOPE shares in the ongoing research data with doctors, researchers and other nonprofit organizations.

Member Profile: Pancreatic Cancer Awareness Gibraltar Charitable Trust

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American singer/songwriter Erin Willett with Pancreatic Cancer Awareness Gibraltar Founder Louis Baldachino. Willett traveled to Gibraltar in November 2018 to perform her popular song, “Hope’s Alive,” during the organization’s “Purple Light” event.

Pancreatic Cancer Awareness Gibraltar Charitable Trust was founded in February 2018 with a focus on raising awareness about pancreatic cancer among the public, general practitioners and other medical institutes in Gibraltar, as well as supporting survivors and those fighting the disease.

The organization set out to create an ongoing and ambitious program of events and projects, called “Purple Impact.” Its goal for these events and projects is to be effective in raising awareness and dialogue with doctors and patients — therefore, it always involves Gibraltar Health Authority’s (GHA’s) medical professionals; cancer sufferers; management, nurses and volunteers of Cancer Relief Centre Gibraltar (CRC); and members of other local cancer charities.

Founder Louis Baldachino, a pancreatic cancer survivor, said he was proud of garnering the involvement of each of these groups in the organization’s events.

Upcoming events for the remainder of the year include:

  • As a follow-up to last year’s visit to Gibraltar by Pancreatic Cancer Action UK’s CEO Ali Stunt, the GHA has agreed for her return to discuss progress in the introduction of GHA’s new pathways.
  • As part of Pancreatic Cancer Awareness Month in November and World Pancreatic Cancer Day Nov. 21, 2019, a special “Purple Light” event will light purple an iconic castle fortress in Gibraltar. Speakers will also be present for this year’s event.

Baldachino said, “We are looking forward to working with the World Pancreatic Cancer Coalition throughout this year and importantly, making World Pancreatic Cancer Day 2019 the most successful one yet in creating an impact in our community.”

Member Profile: Elvin Howard, Sr. Pancreatic Cancer Advocacy Foundation

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Front, left to right: Dr. Yolonda Spooner and Bertha Howard. Back, left to right: Sgt. Elvin Howard, Jr., Dr. Peter Bostick, Wendell Mack, Veronica Howard Sizer, Dr. Monteic A. Sizer, and Edward Ball, Jr

Elvin Howard, Sr. Pancreatic Cancer Advocacy Foundation (PCAF) was founded in the fall of 2016 after several meetings by founding members Bertha Howard, Sgt. Elvin Howard, Jr., Monteic A. Sizer, PhD, and attorney Veronica Howard Sizer. It was formed to honor the memory of Elvin Howard, Sr., a devoted husband, father, grandfather, family man and Christian. Howard was misdiagnosed and treated for diabetes several months prior to being diagnosed with pancreatic cancer.

Elvin Howard, Sr. PCAF was formed to reduce pancreatic cancer deaths and family hardships by raising awareness of pancreatic cancer through supporting research, pancreatic cancer survivors, their caregivers and families of color.

The organization supported legislation in Louisiana that will now make it possible for people battling metastatic cancer to gain access to the best and newest treatment options available. Additionally, the organization has partnered with Let’s Win! to help get leading-edge research and clinical trial information to African Americans and communities of color. A mutual messaging campaign in Louisiana and across the country is also planned in the coming months.

For Elvin Howard, Sr. PCAF, World Pancreatic Cancer Coalition (WPCC) members are serving as key allies for the organization as it seeks to bring greater awareness and treatment options to African Americans and communities of color throughout the United States.

This is critically important due to the disproportionate rate of pancreatic cancer found in the African American community. Dr. Monteic A. Sizer, the organization’s national representative, leads its work with Let’s Win! and recently provided insight and valuable information to WPCC in regard to its upcoming messaging and public awareness campaign. He is also leading discussions about how the organization might partner with the GENERATE Study, funded by StandUp2Cancer and the Lustgarten Foundation. The organization is also discussing with the Pancreatic Cancer Action Network ways to reach the African American community.

Of these collaborations, Sizer said, “We are better and more effective together.”

Member Profile: Neuroendocrine Cancer Awareness Network

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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.

Member Profile: Kenner Family Research Fund

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Kenner Family Research Fund (KFRF) was established in 2013 by family and friends in memory of Peter Kenner, who died just two months following his diagnosis of pancreatic neuroendocrine cancer. KFRF is committed to supporting the development of an early detection protocol for pancreatic cancer by building strong relationships and strategic alliances with research, government, industry and philanthropic stakeholders. Efforts are focused on outcomes that will positively impact the time of diagnosis, length of survival and quality of life.

Barbara Kenner, PhD, founded Kenner Family Research Fund after the death of her husband to pancreatic neuroendocrine cancer.

At the Early Detection of Sporadic Pancreatic Cancer Summit Conference (2014), guided strategic conversations among the invited participants led to new ideas for ongoing scientific collaboration and the formulation of an initial Strategic Map for Innovation. Specific recommendations included screening asymptomatic individuals; restricting screening to enriched high risk groups; the development of biomarkers of PanIN3 and early invasive pancreatic cancer; and novel imaging approaches.

Subsequent forums, including Early Detection: Lessons Learned from Other Cancers (2015) and Early Detection of Pancreatic Cancer: The Role of Industry in the Development of Biomarkers (2016), focused in specific aspects of early detection. The published articles that result from these collaborative forums have provided a broader reach of information to the pancreatic community. Most recently (2018), KFRF has published on the topic of depression and anxiety as a precursor for earlier interception of pancreatic cancer. In addition, KFRF is actively involved in the Early Detection Initiative, a research project studying new onset of diabetes as a potential indicator of pancreatic cancer, as well as the GENERATE (https://generatestudy.org/) research project, which focuses on genetic mutations.  Other collaborative efforts involve the National Cancer Institutes and the American Pancreas Association.

Kenner, far left, moderated a panel discussion about pancreatic cancer research at the WPCC Annual Meeting in 2019.

Included in KFRF’s effort to promote collaboration is its active participation in the World Pancreatic Cancer Coalition (WPCC), whose members consistently serve as a source of inspiration.

For more information, visit the Kenner Family Research Fund website and follow them on Twitter.

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.