Member Profile: The John E. Sabga Foundation for Pancreatic Cancer

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Natalie Sabga with her children, Amanda and Matthew, at The HOPE Gala fundraiser in February 2018 for the John E. Sabga Foundation.

The John E. Sabga (JES) Foundation for Pancreatic Cancer was founded in November 2017 in Trinidad and Tobago by Natalie Sabga, through deep sadness at the loss of her husband after a very short battle with pancreatic cancer.

It was through their relentless journey in search of a cure that the Sabgas realized the importance of research and the need for clinical trials. Since its inception and through its public awareness campaign, the JES Foundation has come to learn of the alarmingly high rate of pancreatic cancer on the islands.

Much more education is therefore needed and we continue to educate our medical fraternity and citizens about the signs and symptoms of pancreatic cancer, so earlier detection can be achieved.

This is an ongoing awareness project with billboard displays and continuous media coverage. The initial goal of the JES Foundation is to raise $1,000,000 (U.S.) to fund the John Sabga study.

John E. Sabga

“We are honored and privileged to partner with the world renowned ‘Giant in Cancer Care,’ Dr. Daniel Von Hoff and the Translational Genomics Research institute (TGen) on this effort,” said Natalie Sabga. “We also look forward, since joining the WPCC, to the wealth of knowledge that comes from its members and are excited to be able to exchange information and resources with so many prestigious organizations, all of whom are dedicated and committed to finding a cure. We are excited to join our fellow WPCC members in November 2018 with the ‘Demand Better’ campaign and will blitz our Facebook page as well as all the cinema screens on the island with the video.”

 

Follow the JES Foundation on Facebook or visit www.johnsabga.com to learn more. It’s Our World! Let’s make it Our Fight!

Pancreatic Cancer Coalition Collaborates to Combat World’s Toughest Cancer

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If you look up collaboration in the dictionary, this is what you’ll get:

col·lab·o·ra·tion
noun
1. the action of working with someone to produce or create something.

If you add the World Pancreatic Cancer Coalition’s (WPCC) commitment to fighting pancreatic cancer on a worldwide level to this definition of “collaboration,” this is what you’ll get:

WPCC col·lab·o·ra·tion
noun
1. the action of pancreatic cancer leaders from 31 countries on six continents at 74 organizations working together to fight the world’s toughest cancer.

At this year’s annual WPCC conference, the word “collaboration” was one of the key takeaways for attendees.

“Over the course of the two days, we heard from scientific experts and fellow members,” wrote Jessica Abelsohn, the co-founder of Australia’s #PurpleOurWorld. “We spoke about what we’ve all done right over the past couple of years and what we can do better. Being way over here in Australia, it’s important for us to feel part of something bigger, and we believe the Coalition provides this. We have always said, right from the beginning, that only by banding together will we beat this disease.”

#PurpleOurWorld was among the 40 member organizations from 22 countries and six continents who attended the 2018 WPCC meeting in Coral Gables, Fla. Members like Abelsohn networked and shared global expertise and experience in advocating for pancreatic cancer patients.

This was the third consecutive year global leaders in the pancreatic cancer space have collaborated, via panel discussions and workshops, to drive transformational change for those affected by the disease.

“WPCC is an incredible opportunity to work together with other organizations across the globe and unite in our fight to end pancreatic cancer,” said Julie Fleshman, JD, MBA, president and CEO of the Pancreatic Cancer Action Network (PanCAN) and chair of the WPCC Steering Committee. “Collectively, our voices are stronger, allowing us to make greater strides toward changing outcomes for pancreatic cancer patients.”

Every day, more than 1,000 people worldwide are diagnosed with pancreatic cancer; of that, we estimate 985 will die from the disease.

This makes our mission to end the world’s toughest cancer an urgent one.

“We can more quickly and efficiently improve these statistics by working together,” said Jenny Isaacson, PanCAN’s vice president of strategic partnerships and projects and WPCC attendee. “Through global collaboration, Coalition members raise awareness of pancreatic cancer and strengthen the capacity and individual efforts of all member organizations. Our mission is to drive transformational change for all those affected by pancreatic cancer.”

The next big event on WPCC’s radar is World Pancreatic Cancer Day (WPCD). The goal of WPCD is to increase knowledge of pancreatic cancer symptoms and risks at a worldwide level. While WPCD falls on Nov. 15 this year, attendees agreed — to really combat this disease, their fundraising, awareness, research and advocacy efforts need to be as strong on the other 364 days of the year as they are on WPCD.

To see how the Coalition is collaborating to combat pancreatic cancer worldwide, follow us on all our social media accounts:

WPCC members extend gratitude to “Visionary Sponsor” Celgene, “Accelerator Sponsors” Novocure and Shire and “Ally Sponsors” Halozyme, Immunovia and Ipsen.

Member Profile: Pancreatic Cancer Action Network

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Founded in 1999, the Pancreatic Cancer Action Network (PanCAN) is dedicated to fighting the world’s toughest cancer. In our urgent mission to save lives, we attack pancreatic cancer on all fronts: research, clinical initiatives, patient services and advocacy. Our effort is amplified by a nationwide network of grassroots support. We are determined to improve patient outcomes today and to double survival by 2020.

Pancreatic Cancer Action Network staff pause for a photo on World Pancreatic Cancer Day 2017.

Through our Scientific Research, we pioneer and push science forward through our nationally acclaimed grants program and the cultivation of a thriving research community. Through our Patient Services, we connect patients with the latest treatment options and provide free, in-depth disease information. Through Government Advocacy, we demand federal funding for research and advocate for legislative support by lifting up our voices to keep pancreatic cancer at the forefront on Capitol Hill. And we lead and activate communities across the country, creating a purple tide of humanity that draws greater awareness and funds to fight the disease.

PanCAN was a founding member of the WPCC, realizing that by working collaboratively, we could have a much greater impact than the sum of our parts.

President and CEO Julie Fleshman, said: “By standing in unison, we hope to save more lives and create a brighter future for the disease with the lowest survival rate of any major cancer.”

For more information, visit www.pancan.org.

Member Profile: Pancreatic Cancer Action

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Pancreatic Cancer Action is a UK charity whose aim is to save lives by focusing on improving early diagnosis of pancreatic cancer.

The charity was set up by a pancreatic cancer survivor, Ali Stunt, three years after her diagnosis in 2007.  Having been involved in setting up the very first UK Pancreatic Cancer Awareness Week in 2009, she decided it was time to step up the levels of awareness for pancreatic cancer and founded Pancreatic Cancer Action in 2010.

The team at Pancreatic Cancer Action with founder Ali Stunt seated, second from right.

The charity has grown exponentially in seven years and now employs 14 staff members. Stunt is regularly featured in the media and holds positions in varying societies/initiatives representing pancreatic cancer and Pancreatic Cancer Action across the world.

Our main areas of focus are:

  • We launch nationwide (and in some cases worldwide) awareness campaigns through the media, social networks, leaflets and posters, to try to make both men and women more aware of pancreatic cancer and its symptoms.
  • We develop e-learning modules for healthcare professionals to educate them and help them spot the signs and symptoms of pancreatic cancer at the earliest stages.
  • We fund a variety of research projects that are focussed on unique and innovative ways to test for pancreatic cancer at the earliest stages.
  • We work with other charities and key stakeholders in the UK and globally to help push pancreatic cancer up the political agenda and campaign for more funding and better treatments.

 

We have also developed e-learning modules for pharmacists and support staff to help support the early diagnosis of pancreatic cancer.

We believe community pharmacy teams play a vital role in the early detection of cancer, and our new National Pharmacy Association-accredited digital learning modules have been specifically developed to help them learn more about the most common symptoms of pancreatic cancer. This will help pharmacists and support staff identify when urgent referral to the GP is required, which could potentially save a life.

A Pancreatic Cancer Action bus stop sign raises awareness.

Since the inaugural meeting in 2016, the WPCC has achieved a great deal and we have developed strong relationships with the members.  We are looking forward to working together in 2018 to develop new and engaging global campaigns by integrating our activity, teams and support bases, building on what we have learned from the coalition’s previous campaigns.

The theme of “Demand Better” resonates with all of us at Pancreatic Cancer Action. We hear daily of people being diagnosed too late for surgery. We want to “Demand Better” survival rates for pancreatic cancer through a government-led public awareness campaign, more research funding and by providing general practitioners with the tools required to diagnose patients in primary care.

Member Profile: Pancreaskreft Nettverk Norge

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The Board of Directors for Pancreaskreft Nettverk Norge

Pancreaskreft Nettverk Norge (Norway) was established just over a year ago, following an initiative to arrange a seminar on World Pancreatic Cancer Day (WPCD) 2016.

The network was a joint initiative by healthcare personnel, patients and their relatives following informal discussions about why so little is done to support pancreatic cancer patients in Norway. Today, the board of the network is chaired by Professor in Pathology Caroline S. Verbeke, and its members include an oncologist, a surgeon, two patients and a relative.

The network has agreed to focus its work on five areas:

  • Raise awareness of pancreatic cancer among politicians, healthcare workers and the general public
  • Provide relevant and reliable information about pancreatic cancer
  • Improve access to new treatment modalities
  • Increase funding for clinical and associated basic research
  • Engage in international collaboration to reach our goals

Progress is being made in all focus areas. The group has met with politicians and have received good media coverage as part of WPCD 2017. It established a website in Norwegian with reliable information about pancreatic cancer (www.pknn.no). And progress is being made with starting more pancreatic cancer clinical trials and raising funding for more research.

Last year the organization became a member of the World Pancreatic Cancer Coalition. Being a small organization in a small country, it is of great value for the network to be part of a larger community. With regard to WPCD, especially, the group is encouraged to see what others have achieved and how they can learn from them.

Member Profile: Pancreatic Cancer Canada

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Pancreatic Cancer Canada supporters gather at a recent walk.

Pancreatic Cancer Canada (PCCF) is focused on fighting pancreatic cancer through research, awareness, education and advocacy. Its goals are to improve overall patient survival rates and support those who are affected by this deadly disease. Since its inception in 2006, PCCF has invested nearly $4 million in research at cancer centers across Canada — funding studies that look at early detection, treatment and improved patient outcomes.

 

In November 2017, PCCF launched its first and very successful national awareness campaign: “Assumptions Can Be Deadly.” A bold and direct campaign, Assumptions created a momentum and dialogue in the public sphere that PCCF is determined to maintain and elevate in 2018 and beyond. The facts of this predatory cancer are unacceptable and PCCF is committed to changing the script for people diagnosed with this disease. The organization has engaged a global public relations firm to help mobilize efforts in converting awareness to ACTION. They will do this together with the community they support, donors, researchers, allied partners and media.

 

Pancreatic Cancer Canada has a table at Google Giving Day.

This is why the Demand Better campaign is so relevant to PCCF. It is an opportunity for likeminded groups to stand shoulder-to-shoulder in solidarity for those lost to pancreatic cancer and a way to bring everyone’s voices together to communicate the urgency. PCCF is proud to be a part of the campaign as a united front and to show those they serve that they are working hard to make good on their promises to them.

One of PCCF’s goals with the World Pancreatic Cancer Coalition is to elevate collaborations for corporate and industry partnerships. They believe there is immense opportunity for their groups collectively, and when coupled with their common objectives and vision, there is potential for far-reaching impact. PCCF is grateful for the generosity of so many partner groups in the Coalition who share across geography and borders so that all succeed together.

 

For more information on PCCF and “Assumptions Can Be Deadly,” visit www.pancreaticcancercanada.ca and www.assumptionscanbedeadly.ca

Member Profile: EuropaColon

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EuropaColon was launched in 2004 by Jola Gore Booth, who responded to a call to support colorectal cancer patients outside of the United Kingdom. For the next 10 years, the organization grew across Europe and established a reputation for commitment and dedication to the interests and needs of these patients. EuropaColon has now established or partnered with 43 advocacy groups in 32 European countries.

In 2015, recognizing that patients with other digestive cancers were not getting information or the support they needed, the board of EuropaColon decided to expand into these cancers, starting with pancreatic. In that year, the organization took part in early meetings that led to the forming of the World Pancreatic Cancer Coalition (WPCC).

EuropaColon strongly supports the work of the Coalition and raising awareness of pancreatic cancer. We see our main contribution as raising awareness of this and other digestive cancers amongst our Affiliate and Associate groups in Europe. Wherever possible, we encourage them to expand into the wider digestive cancers arena and to join the WPCC.

During our Masterclass in June this year, we included for the first time a module on pancreatic cancer. Our speakers presented the latest clinical developments and a session specifically discussed issues from a patient perspective. It was encouraging to see that this led to a number of our groups agreeing to expand their work and embrace pancreatic cancer as part of their strategy.

Working in digestive cancers has proven a most valuable opportunity, giving us the chance to learn from other organizations and to contribute our experience and that of our groups to the mix — all the while watching the drive and enthusiasm from WPCC that proves that mountains can be moved.

For more information, visit www.europacolon.com.

Global Media Goes Purple on World Pancreatic Cancer Day

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Media outlets across the globe helped raise awareness of the symptoms and risks associated with the world’s toughest cancer on World Pancreatic Cancer Day, inspiring people to take action and Demand Better. For Patients. For Survival.

Below are a few worldwide media highlights:

World Pancreatic Cancer Day, which is observed around the globe each November during Pancreatic Cancer Awareness Month, is a one-day event aimed at raising critical global awareness of the disease and motivating people to take action.

Every day, more than 1,000 people worldwide are diagnosed with pancreatic cancer. Within that amount, an estimated 985 will die from the disease. Additionally, pancreatic cancer has the lowest survival rate among all major cancers, and in nearly every country, it is the only one with a single-digit, five-year survival rate (two to nine percent). These stunning figures are not merely statistics; they represent family members, friends and colleagues living around the world.

The World Pancreatic Cancer Coalition comprises more than 60 pancreatic cancer organizations and advocacy groups across the globe in efforts to raise awareness of the world’s toughest cancer and highlight the need for greater funding and research.

World Pancreatic Cancer Day, which is championed by the Coalition, will take place in 2018 on Thursday, Nov. 15. Learn more at worldpancreaticancerday.org. Follow the WPCC on Facebook, Twitter and Instagram.

World Pancreatic Cancer Coalition Demands Better in New Video

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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.

Swiss Self-Help Organization Pancreatic Diseases

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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.”