Selbsthilfegruppe Pankreaskarzinom (Support Group Pancreatic Cancer)

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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.

Craig’s Cause Pancreatic Cancer Society

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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.

Member Profile: TEB e.V. Selbsthilfe (Germany)

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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:

Global Meeting Generates Progress, Unity and Inspiration

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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

Member Profile: Pancreatic Cancer Scotland

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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.

Bienvenue au Canada: Montreal Welcomes Our Second Annual Meeting May 2-5

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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.

LET’S WIN!

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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.”

Member Highlight: The National Pancreas Foundation

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Matt Alsante, Executive Director, National Pancreas Foundation, at a hero-themed fundraiser.

The National Pancreas Foundation (NPF) is celebrating its 20th anniversary, having been created in 1997. The NPF was co-founded by Jane Holt, a pancreatitis patient, and Patter Birsic, who lost her sister-in-law to pancreatic cancer. The experiences of both the Holt and Birsic families led to the NPF being the only organization dedicated to all diseases of the pancreas, with a focus on pancreatic cancer, pediatric pancreatitis, acute pancreatitis and chronic pancreatitis.

The NPF mission is to provide hope, with a focus on research, education, advocacy and support for pancreatic cancer and pancreatitis patients and families. To fulfill its mission, the NPF raises funds from which grants are made directly to researchers seeking to resolve the challenging medical problems of pancreatic diseases. A National Patient Registry has been developed for individuals suffering the isolating and debilitating conditions associated with pancreatic disease. The Registry has a patient portal and an institutional partnership component. The NPF also has a program called the Animated Pancreas Patient. This program has animations and expert interviews on all forms of pancreatic disease, including pancreatic cancer and clinical trials. The clinical trials module can be of great benefit to a newly diagnosed patient, as it explains what clinical trials are and the terminology that is used, as well as why they are important to consider — all in an easy to understand format.

The NPF is looking to work with the other organizations of the WPCC in making sure they are aware of its programs, advocating together for greater funds invested toward pancreatic cancer research, and to learn about the programs that are available to pancreatic cancer patients from other organizations.

“We are looking forward to the next WPCC meeting,” said Matt Alsante, executive director, “where we can discuss how we can have a unified voice to not only advocate for pancreatic cancer patients in November, but how we can work together all year long to make sure the voices of the patients and families we represent are being heard.”

Honoring the life of Anne Glauber, co-founder of Coalition member Let’s Win!

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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

Member Highlight: Pancreatic Cancer Spain

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A volunteer helps out at a Pancreatic Cancer Spain event.

Pancreatic Cancer Spain was founded in 2014 as a chapter of GEPAC, the Spanish Cancer Patients Group. Its mission is to ensure that pancreatic cancer patients have timely and affordable access to the best treatment and care available, to improve early diagnosis and to improve the quality of life for all those affected by pancreatic cancer — patients, families, caregivers and relatives.

The organization works in the following areas: advocacy, research, capacity building/education and partnership.

“We guide patients, helping them navigate the healthcare system, and making sure they have access to reference centers and specialized care,” said Patients and Public Affairs Manager Natacha Bolaà±os, who is also a cancer rehabilitation specialist with Pancreatic Cancer Spain.

“We ensure patients feel empowered to make informed decisions about their treatment and care in part by providing educational resources and programs, facilitating information about diagnosis, new treatments and clinical trials, and by providing psycho-oncological support for patients and their families.”

Pancreatic Cancer Spain represents and defends the interests and rights of pancreatic cancer patients at the national and international level.
The organization advocates to make cancer a priority on the Spanish health policy agenda — it plays an active role in shaping national healthcare policies that affect cancer patients and in creating national laws to satisfy patients’ needs.

“We also call for research on survivorship issues and advocate for better healthcare and social services for patients,” Bolaà±os said.

She added that the organization was proud to be a WPCC member and hoped to share experiences, knowledge and best practices, as well as establish alliances and common goals.

“I also look forward to learning more about fundraising ideas that can be successfully translated to Europe, since fundraising practices here are much different than in the U.S.”