Member Profile: WINGS OF HOPE FOR PANCREATIC CANCER RESEARCH

, , , ,

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

, , , ,

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

, , , ,

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

, , , ,

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

, , , ,

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

, , , ,

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

, , , ,

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

, , , ,

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

, , , ,

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

, , , ,

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.