Several leaders from the World Pancreatic Cancer Coalition (WPCC) are featured in a new video sharing why and how they Demand Better. For Patients. For Survival, today, World Pancreatic Cancer Day.


Featured in the video: Julie Fleshman, JD, MBA, president and CEO of the Pancreatic Cancer Action Network (PanCAN), Barbara Kenner, Founder of the Kenner Family Research Fund, Liz Feld, president of The Suzanne Wright Foundation, Kerri Kaplan, President and CEO of The Lustgarten Foundation, Cindy Gavin, Founding Executive Director of Let’s Win, and Dino Verrelli, Founder and CEO of Project Purple.

The World Pancreatic Cancer Coalition comprises more than 60 pancreatic cancer organizations and advocacy groups from around the globe in efforts to raise awareness of the world’s toughest cancer.

The World Pancreatic Cancer Coalition oversees World Pancreatic Cancer Day, which is observed around the globe each November during Pancreatic Cancer Awareness Month. This one-day event aims to raise critical global awareness of the disease and inspire people to take action.

Currently, there is no screening test or early detection method for pancreatic cancer. Though research is being conducted to help in these areas, knowing the symptoms and risks remains the key to early diagnosis.

More than 53,000 Americans will be diagnosed with pancreatic cancer this year. That equates to 145 mothers, fathers, daughters, sons and friends that will receive the unfortunate news today alone. The disease has a five-year survival rate of just 9 percent, the lowest survival rate among all major cancers in America.

Learn how you can Demand Better today by visiting worldpancreaticcancerday.org. Follow the WPCC on Facebook, Twitter and Instagram.

Anna-Barbara Sterchi of Swiss Self-Help Organization Pancreatic Diseases presents at SSP assembly in 2017.

The SSP Schweizer Selbsthilfeorganisation Pankreaserkrankungen (Swiss Self-Help Organization Pancreatic Diseases) was founded in 1998 by Conrad Rytz to provide medical information concerning pancreatic diseases and the available therapies. At this time, the SSP published a brochure in collaboration with the University Hospital of Berne (InselSpital) for patients and organized information events at various hospitals. A decade later, unfortunately, the group of active members had diminished considerably and the SSP became silent.

In 2012, Daniela Meier contacted Conrad Rytz with the idea to re-launch the organization, and he was able to bring on Anna-Barbara Sterchi (head of nutrition counselling of InselSpital and member of the SSP-advisory board) and René Huber for the project. This project group initiated an online survey in order to collect the information needs of people affected by a pancreatic disease, as well as create a new website and the SSP-logo. In the past three years, the project group gained new members, who then elected the new executive board.

This new board shifted the focus to empowering patients to get access to suitable resources that would improve their health-related quality of life. The main platform for self-empowerment is the website www.pancreas-help.ch. Another resource is provided by the local self-help groups. Here, people affected support each other by sharing their knowledge and experience, thus strengthening their autonomy as well as their competence. On World Pancreatic Cancer Day on Nov. 16, 2017, the SSP will also organize a cooking event in Switzerland’s capital, Berne.

“As a volunteer organization,” said Meier, who serves as SSP president, “the SSP relies on funding and would be grateful to the World Pancreatic Cancer Coalition for help in opening doors to international companies based in Switzerland offering sponsorship. In addition, WPCC templates for posters that would allow Swiss figures and languages to be fitted in would be appreciated.”

Joseph C. Monastra passed away April 4, 2002, only four short weeks after being diagnosed with pancreatic cancer.  In honor of Monastra’s memory, his family established the Joseph C. Monastra (JCM) Foundation for Pancreatic Cancer Research, a non-profit 501(c) 3 organization. The mission of the JCM Foundation is to engage in charitable, educational and scientific activities, including funding research, scientific endeavors and other activities directed at eradication of cancer — specifically pancreatic cancer. Money raised by the JCM Foundation supports early detection research at the Johns Hopkins Medical Institutions (JHMI) and Emory University — Winship Cancer Institute, which includes breakthrough research in the genetic analysis of single pancreatic cancer cells and defining the molecular changes that underlie the moment of invasion in pancreatic cancer.

The Monastra family of the JCM Foundation, from left: Vice President Pamela Monastra; Secretary Maureen Monastra-Vrh; President Grace Saunders; and Treasurer Monica Monastra Lodge.

Other critical initiatives funded by the JCM Foundation over the past 15 years include research to improve diagnosis, classification, and clarification of the molecular mechanisms of pancreatic cancers and to focus on the genetics and biological determinants of familial pancreatic cancer risks. With the continued support of the JCM Foundation, JHMI has made significant progress in the analysis of sequence data from the genomes of more than 650 familial pancreatic cancers patients.

As a firm advocate of the need for grassroots funding, the JCM Foundation continues to host fundraising events from Chicago to Atlanta. From motorcycle rides and 5K races to art auctions and golf tournaments, the JCM Foundation remains committed to continuing the fight to find an early detection for pancreatic cancer. This year, we are excited to host our inaugural “Cheers for a Cure” on November 11th at the Cress Creek Country Club in Naperville, Ill.  Attendees will be treated to 50 different wine tastings, cocktails, food stations, a silent auction/raffle, a live band and more! For more information and to register and buy tickets, please go to Cheers for a Cure.

The JCM Foundation is actively involved in the World Pancreatic Cancer Coalition with a board member currently serving on the World Pancreatic Cancer Day (WPCD) committee. We have joined the WPCC in an effort to work globally with other like-minded organizations to make a bigger impact in pancreatic cancer research and patient care.

The first Austrian patient advocacy group dedicated solely to pancreatic cancer, Selbsthilfegruppe Pankreaskarzinom was founded in 2016 by Michaela Hartenstein. Two years after the death of her mom — she was diagnosed with pancreatic cancer at the age of 63 years — Hartenstein decided to quit her job within the pharmaceutical industry to fully support patients and families fighting this dreadful disease and to set up a patient advocacy group in Austria.

The main activities of the group are:

  • Providing information via our recently launched website selbsthilfe-pankreaskarzinom.at, where we try to cover all relevant topics for pancreatic cancer patients and their families. We constantly reach out to pancreatic cancer specialists in Austria to establish a network and publish expert opinions to keep the website interesting and alive.
  • We foster exchange amongst those affected by pancreatic cancer and provide support and help to pancreatic cancer patients and their families.
  • We aim to improve earlier diagnosis by making the general public aware of the disease, its symptoms and associated risks.

Among the group’s recent activities, there is an online course on “Diet and Nutrition Needs for Pancreatic Cancer Patients,” soon to be launched. Although it is known that good nutritional care translates into quality of life and may even improve outcomes, in clinical practice there is often limited time to discuss this important topic with patients and their relatives.

 

As the main activity on World Pancreatic Cancer Day in 2017, the organization is planning to illuminate an official building in Vienna in purple to raise awareness and have a smaller gathering of survivors, family and friends who have felt the impact of pancreatic cancer.

 

Learn more at www.selbsthilfe-pankreaskarzinom.at.


 

 

 

 

 

 

 

Since its inception, this grassroots organization has grown into a national charitable society recognized for its national education and awareness campaigns and for supporting patients and caregivers. Additionally, with our fundraising efforts, we support pancreatic cancer researchers from all over Canada. To achieve this, we have literally cycled mountains, walked for miles, jumped off wharfs, and lit up the night with fireworks.

Craig’s Cause Pancreatic Cancer Society was formed in 2006 after Craig Schurman Condon passed away at the age of 63, eight weeks after diagnosis. We have four pillars that guide all of our work: Awareness, Education, Research and Support. Every one of our projects focuses on one or more of these pillars. We are excited about our many upcoming fall awareness events, our national physician education campaign, our Knowledge Bank initiative for research and our ongoing patient support programs.

Working with the WPCC has been amazing. We get support and the opportunity to collaborate with organizations from around the world. For every new project, we look to see if organizations may have done something similar and can offer their advice.

The asset map that has been created also allows us to direct patients to the resources they need wherever they live.

Already looking forward to Florida 2018!

See our website for more information at www.craigscause.ca.

TEB e.V. Selbsthilfe was founded in Germany by Katharina Stang in 2006.

TEB e.V. Selbsthilfe was founded by Katharina Stang in 2006 with the aim of providing support to people with pancreatic diseases and their loved ones, as well as education, advice and assistance for their condition. The German acronym “TEB” stands for “Tumors and diseases of the pancreas.” For more than 10 years, Chairwoman Katharina Stang has led the group, which is based in Ludwigsburg but active throughout the country. She works closely with a scientific advisory board of leading German gastroenterologists and oncologists.

Helping those affected by pancreatic diseases and their loved ones through personal contact and information is a top priority for Stang and her team. “We listen — We help — We advise — We accompany — We support”: These guiding principles sum up TEB’s efforts, which are distinguished by a range of offers and initiatives. The patient organization’s key activities include regular group meetings, educational events, brochures, counsel sessions for relatives, seminars for doctors and patients, expert medical advice via phone, hospital visits and social activities such as cooking sessions and workshops with those affected. The group also provides multiple materials such as info folders, leaflets and a regularly published member magazine, which nicely complement the TEB websites.

TEB e.V. Selbsthilfe holds group meetings for people affected by pancreatic cancer.

From the very beginning, TEB has been actively engaged within the World Pancreatic Cancer Coalition (WPCC) and contributed to the inaugural launch of the World Pancreatic Cancer Day. “2017 is the fourth year we are organizing this global awareness day. Together, we have forged the most important initiative for boosting awareness and education on a global scale,” Stang said. “We are proud to represent Germany within the Coalition and appreciate the interaction with other national groups, as well as the knowledge that we are all fighting for the same cause: to improve pancreatic cancer treatment through research and education — and to hopefully one day find a cure.”

Additional links:

Montreal, Canada welcomed more than 80 attendees from more than 20 countries to the second annual World Pancreatic Cancer Coalition (WPCC) meeting May 2 — 5, 2017.

“The energy, momentum and enthusiasm at this year’s meeting was extremely exciting and inspiring for all of us,” said Julie Fleshman, JD, MBA, Chair of the WPCC and president & CEO of the Pancreatic Cancer Action Network. “It’s remarkable to hear the individual perspectives and ideas from the Coalition members and even more incredible knowing the passion we all have to raise awareness together, as one voice, in the fight against pancreatic cancer.”

The country greeted the more than 40 pancreatic cancer organizations with open arms. Canadian-based host organizations, Pancreatic Cancer Canada Foundation and Craig’s Cause Pancreatic Cancer Society, secured support and proclamations from Justin Trudeau, the Prime Minster of Canada, and Stephen McNeil, the Premier of Nova Scotia.

Attendees at the second annual World Pancreatic Cancer Coalition meeting in Montreal, Canada.

“This gathering provides delegates with a wonderful opportunity to discuss innovative ideas on detection methods and treatment options for pancreatic cancer,” said Trudeau in his welcome letter to Coalition members. “You can take satisfaction in knowing that your dedicated efforts are making a significant difference in the health and well-being of Canadians.”

Over the course of three days, attendees explored fundraising and advocacy best practices, as well as patient and caregiver empowerment strategies, listened to impassioned testimonials from pancreatic cancer survivors and heard about the latest research trends from leading physician-scientists.

Kelly’s Heroes was one of 40 pancreatic cancer organizations in attendance at this year’s event

The WPCC Steering Committee plans to identify ways to support this kind of sharing of expertise and resource year-round based on the positive feedback provided in the post-meeting evaluation forms.

Attendees also took time to reflect on the many accomplishments from each individual Coalition partner, as well as the collective whole.

Between 1997 and 2016, WPCC member organizations have funded approximately $200 million in research funding, representing over 500 individual grants.

Since last year’s inaugural gathering in Florida, 10 new organizations have joined the WPCC, representing Spain, Germany, Greece, Norway, Switzerland and the United States — bringing the WPCC member total to 62 member organizations representing 24 countries.

“As the Coalition grows in numbers and strength, member organizations will work together on global initiatives to raise awareness and highlight the need for more funding to fight pancreatic cancer,” added Fleshman.

One of the coalition’s primary activities is World Pancreatic Cancer Day (WPCD), which will be held this year on Thursday, Nov. 16. The one-day event aims to raise global awareness of the disease.

Clara MacKay, WPCC consultant, and Alex Ford from Pancreatic Cancer UK, are all smiles at the annual WPCC meeting

While onsite, Coalition members participated in a series of brainstorm and planning discussions on how to improve upon and expand the annual awareness opportunity. More details on this year’s World Pancreatic Cancer Day will be announced in the coming weeks at worldpancreaticcancerday.org.

As the World Pancreatic Cancer Coalition plans next year’s annual meeting and World Pancreatic Cancer Day, member organizations will individually and collectively continue to fulfill the Coalition’s mission to drive transformational change for all those affected by pancreatic cancer. Learn more about the Coalition at worldpancreaticcancercoalition.org.

Below are several quotes from Coalition members in response to the annual meeting, as well as social media snapshots from the event.

View more photos from the second annual Coalition meeting on Facebook and get connected with the Coalition and World Pancreatic Cancer Day on social media.

World Pancreatic Cancer Coalition: Facebook, Twitter and Instagram

World Pancreatic Cancer Day: Facebook, Twitter and Instagram

– Our strength is that we learn from each other
– So much information – 2 days out of 365 is not enough
– We are a family – driven by passion.  It is motivating to see us operate as one
– We as a group can make a real difference
– If we had the same unity in the clinical world as we do in the WPCC, it would make life easier
– No egos in the room – it’s about all of us, not just one group
– Great things never come from staying in your comfort zone!

 

Justin Trudeau, Prime Minister of Canada, welcomes WPCC members to Canada

 

Though serious in nature, the WPCC meeting was one of fun and productivity

 

A representative from the United Kingdom raises their flag in support of the WPCC

Members of Pancreatic Cancer Scotland, pancreatic cancer researchers from Glasgow University and the Roberson family of the U.S.

Pancreatic Cancer Scotland was formed in 2010 by a group of patients, caregivers, nurses and doctors in Scotland to share hope, knowledge and action in the battle against pancreatic cancer.

The team at Pancreatic Cancer Scotland works with fundraisers, volunteers and supporters to develop and grow the charity with a focus on raising awareness and education of pancreatic cancer and supporting patients and families in Scotland affected by the disease.

The charity has historically been mainly volunteer-driven and recently embarked on a new stage of significant growth, with a new staffing structure to strengthen and support its development and work toward ensuring that throughout Scotland, anyone affected by pancreatic cancer has access to information and support.

Fiona Brown of Pancreatic Cancer Scotland with members of the Roberson Clan — an American family who honored their ancestry and family members lost to pancreatic cancer with a 168-mile trek across Scotland.

Fiona Brown attended the World Pancreatic Cancer Coalition (WPCC) meeting in Montreal in May 2017, a couple of months after transitioning from volunteer to fulltime Development Manager for the charity.

She said: “I have met so many people who have been affected by pancreatic cancer, including sadly losing two of my own family members, but it was really quite overwhelming to see and feel the global fight we have against pancreatic cancer. I was honored to represent our charity and Scotland at the meeting and be even more inspired by what we can do together as a team. There is a united passion to change the pancreatic cancer story and statistics so that we all know more survivors.”

Pancreatic Cancer Scotland is proud to be a member of the WPCC and contribute to its work and activities. Over the next year, Pancreatic Cancer Scotland is looking forward to continuing to build on the group momentum that was created over the few days in Montreal by working together, learning from each other and collaborating.

“That’s how we can support the coalition’s aim to drive transformational change for all those affected by pancreatic cancer,” Brown said.

More than 40 pancreatic cancer member organizations representing 20 countries in our global alliance are expected to attend the second annual World Pancreatic Cancer Coalition (WPCC) meeting next week in host city Montreal, Canada.

The two-day meeting allows representatives to share fundraising, media outreach and advocacy best practices while hearing the latest updates from members of the scientific community, as well as pancreatic cancer survivors.

“By working together, we will continue to raise the global visibility of pancreatic cancer with the ultimate goal to improve outcomes for patients,” said Julie Fleshman, JD, MBA, chair of the WPCC and PanCAN president and CEO.

Pancreatic cancer is the seventh most common cause of cancer-related death in men and women combined worldwide. Only two to 10 percent of those diagnosed survive five years.

World Pancreatic Cancer Coalition members at their Annual Meeting last year in Orlando, Fla.

This year’s meeting speakers include  Dr. Robin Urquhart, assistant professor at the Beatrice Hunter Cancer Research Institute at Dalhousie University,  Dr. Malcolm Moore, president of the British Columbia Cancer Agency, and Libby Znaimer, eight-year pancreatic cancer survivor and board member of Pancreatic Cancer Canada.

Participants will also discuss World Pancreatic Cancer Day, which the Coalition oversees. World Pancreatic Cancer Day (WPCD) is observed around the globe each November during Pancreatic Cancer Awareness Month.

World Pancreatic Cancer Day aims to raise critical global awareness of the disease, because with more research funding and more people taking action, pancreatic cancer survival rates can, and will, improve. This year, WPCD will be held on Thursday, November 16.

Follow along on social media for updates from our annual meeting on Facebook, Twitter and Instagram; or join the conversation by using #worldpcc and #pancreaticcancer.

Read the full meeting press release here.

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.”