Member Profile: Arbeitskreis der Pankreatektomierten e.V. (AdP)

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Our Story

The Arbeitskreis der Pankreatektomierten e. V. (AdP) was founded in 1976 by patients in Heidelberg and has been a registered association since 1979. The AdP is headquartered in Bonn. The AdP will therefore soon be celebrating its 50th anniversary. The non-profit organization is comprehensively supported by the Deutsche Krebshilfe (DKH) foundation. The patron of the AdP is Prof. Dr. Dietrich Grönemeyer.

Doctors from all specialties and nutritional therapists have supported the AdP e.V. since its inception. The association has around 1,500 members in 60 regional groups, making the AdP the largest association for pancreatic cancer sufferers in Germany and its neighboring countries.

The aim of the AdP is to promote the health and rehabilitation of partially and totally pancreatectomized as well as non-operated pancreatic patients, with a special focus on cancer patients and their relatives. Every year, more than 21,000 people in Germany are diagnosed with a pancreatic tumor. The trend is clearly rising.

Education about pancreatic cancer

Information campaigns: Through targeted information campaigns on social media, on their website and in the local press, they can raise awareness of the symptoms and severity of pancreatic cancer.

Events: We are planning information evenings and workshops to engage directly with the public and pass on important information.

Greater public awareness

Media presence: They rely on press releases, interviews and articles in renowned media to draw attention to their cause.

Partnerships: By partnering with other health organizations and local associations, they can expand their reach and reach more people.

Promotion of research

Research collaborations: They work closely with universities and hospitals to support and advance innovative research projects.

Publicizing the risks

Prevention programs: They provide information on risk factors such as smoking, obesity and genetic disposition and emphasize the importance of early detection.

Educational materials: They provide easily accessible information on prevention and early detection through brochures, flyers and online resources.

Ongoing Projects

The AdP has been an established part of the spectrum of self-help groups in Germany for years. The content, the self-help of those affected by pancreatic cancer, requires a particularly sophisticated approach due to the very specific expertise required in dealing with pancreatic diseases and secondary conditions during the course of the disease or in the course of surgical treatment, for example.

The necessity and growing importance are clearly reflected in the almost 50 years of existence and constantly expanding profile of AdP’s work.

As a self-help organization for pancreatic cancer patients, it is their goal to provide more information about the serious diagnosis of pancreatic cancer, to achieve greater public awareness, to promote more research into the diagnosis of cancer and to make the risks of pancreatic cancer better known. They firmly believe that these measures can not only improve the quality of life of those affected, but also increase the general health literacy of the population. Together we can make a difference and better overcome the challenges of pancreatic cancer.

The WPCC already supports their goals. It is important that their goals are also pursued and supported internationally. The WPCC does this very well. As their activities are currently limited to German-speaking countries, the WPCC is their hope that their goals will also be coordinated and supported internationally.

They look forward to organizing World Pancreatic Cancer Day with the WPCC again in 2025, as they have done every year since the founding of the WPCC and their membership of this important international organization, to try to raise awareness of this serious disease.

To learn more about the Arbeitskreis der Pankreatektomierten e. V. (AdP), visit their Member Page

 

Member Profile: The Lustgarten Foundation

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Our Story
Established in 1998 from a need for better treatment options and outcomes for pancreatic cancer patients and their families, the Lustgarten Foundation continues to accelerate groundbreaking discoveries in understanding, detecting, and treating pancreatic cancer.

The Lustgarten Foundation is the largest private funder of pancreatic cancer research in the world. To date, the foundation has invested more than $282M in high-risk, high-reward research to accelerate and expand life-saving treatment options. Lustgarten boasts a unique, collaborative, science-focused strategy and has been a driving force in every major advancement in pancreatic cancer research for 26 years.

Ongoing Projects

The foundation currently funds 58 active research grants across 33 institutions, progressing the best science to transform pancreatic cancer into a curable disease.
The Lustgarten Foundation has been a proud member of the World Pancreatic Cancer Coalition since its inception, firmly believing that we can make a more profound impact together.
Learn more about the Lustgarten Foundation at www.Lustgarten.org or on social media (@LustgartenFDN).

To learn more about the Lustgarten Foundation, visit their Member Page

 

Member Profile: Hirshberg Foundation for Pancreatic Cancer Research

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In 1997, the Hirshberg Foundation was established to fund groundbreaking scientific research, provide patient education and support, and sustain the hope that this cancer will be eradicated once and for all. To date, four of its five goals and mission pillars have been accomplished, with a cure being the final piece of the puzzle. Today, the Foundation offers a wide array of programs focused on accelerating pancreatic cancer research, comprehensive support services for patients, and raising awareness in the community.

 

OUR STORY

Agi Hirshberg set out on an extraordinary journey to lead the fight against pancreatic cancer in honor of her late husband, Ronnie. Determined to find answers, she made a promise that still holds true: she would be relentless in the fight against this disease, and she would never give up. Today, the Foundation is at the forefront of pancreatic cancer research and is a beacon of hope for patients and families facing this disease.

 

The Hirshberg Foundation’s research efforts began at UCLA with the establishment of The Ronald S. Hirshberg Chair in Translational Pancreatic Cancer Research and the opening of the Ronald S. Hirshberg Translational Pancreatic Cancer Research Laboratory. The Foundation’s world-renowned Seed Grant Program began providing early research funding. Soon after, the Foundation funded the UCLA Pancreas Tissue Bank and the Sahin-Toth Laboratory at UCLA.

Ongoing Projects

Seed Grant Program

Every year, the Seed Grant program provides research funding for innovative projects led by basic and clinical investigators. Over 120 research projects at institutions in the US and overseas have been funded. Projects focus on treatment/therapy, patient care, early diagnosis, detection, cancer biology, basic science, prevention/metabolism, and research core facilities.

UCLA Partnership

This longstanding partnership plays a crucial role in advancing research and improving patient outcomes. The Foundation has established laboratories, core research facilities, and the Pancreas Tissue Bank on campus. As a member of the Canopy Cancer Collective, our UCLA team is making great strides in nutrition, palliative care, genetic testing, clinical trial participation, and patient education. The clinical trial portfolio of the Agi Hirshberg Center for Pancreatic Diseases is also among the strongest in the country.

Agi Hirshberg Center for Pancreatic Diseases

The Center for Pancreatic Diseases continues to set the standard for state-of-the-art care. Patients are able to meet with surgeons, medical oncologists, gastroenterologists, palliative care specialists, dieticians, genetic counselors, clinical trials coordinators, and therapists from the Simms-Mann psychosocial care team – all in one location and often in one visit. The facility has made tremendous progress, assembling an ever-growing arsenal of tools to understand and mitigate the effects of the illness and advance its quest for greater patient comfort.

Symposium for Patients & Families

The 18th Annual Symposium on Pancreatic Cancer returns in April with many new topics and guest speakers. This invaluable event is provided free of charge and brings together patients, caregivers, medical professionals, and scientific researchers. The highlight of the day is the Survivor and Caregiver Panel with invited speakers sharing firsthand experiences, unique perspectives, and inspiration with survivors and caregivers.

To learn more about the Hirshberg Foundation, visit their Member Page


 

Member Profile: The Purple Iris Foundation

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The Purple Iris Foundation, established in 2012 by Christina Parrish, a 16 year survivor of Stage 4 Pancreatic Cancer, is a registered 501(c)(3) organization based in Brewer, Maine.

Ongoing Projects

The Purple Iris Foundation’s dedicated mission is to raise awareness, offer support, and inspire hope among individuals and families impacted by cancer. They achieve this through a range of support initiatives: They offer patient assistance grants, providing direct payments of up to $500 annually, along with monthly Hannaford gift cards and gas cards to assist Maine residents battling cancer in reaching their appointments.
Examples of covered expenses include rent, mortgage payments, heating fuel, car expenses, and more. This not only provides crucial support but also instills hope in those facing challenging circumstances. Additionally, they maintain regular contact via phone calls or emails to check on their well-being and offer navigation assistance through their cancer journey to those who request it. They also proudly illuminate Maine in purple during Pancreatic Cancer Awareness Month. This annual initiative holds a special place in the heart of our Founder, reflecting our commitment to advocacy and awareness. They are hopeful, that a spotlight would give them more exposure to the important work we do in Maine.

They are looking forward to working with the WPCC to really make more of an impact in patient lives and outcomes, as well as being able to assist more Mainers battling cancer.

To learn more about Purple Iris Foundation, visit their Member Page


 

Member Profile: Kelly’s Heroes

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Kelly’s Heroes, founded in 2016, gives pancreatic cancer patients hope to live with pancreatic cancer. Their work is inspired by Steve Kelly, an editor at the Philadelphia Inquirer, much-loved family man and friend to many. After he was diagnosed with stage 4 pancreatic cancer at age 53, Steve participated in two clinical trials, advancing what we know about this terrible disease and creating opportunities for pancreatic cancer patients today and tomorrow. That legacy lives on in the Steve Kelly Fund for Pancreatic Cancer Research at Johns Hopkins.

Steve Kelly lived with pancreatic cancer for 22 months after his diagnosis. In those 22 months, he white-water rafted and ziplined in Costa Rica; ran a 5K with his daughter; and donned his kilt and poured the Guinness at his annual St. Patrick’s Day bash. Even with stage 4 cancer, he lived with a capital L.

Writing for the Inquirer, Steve said, “Sooner rather than later, these dedicated medical professionals will develop cures for cancer. I would love to be here when it happens.”

To learn more about Steve’s story check out the links below:

Ongoing Projects

Kelly’s Heroes’ efforts support two priorities: clinical trials that give patients greater treatment options and research into an early detection test. Their fund-raising primarily supports the work of three Hopkins’ physicians – Drs. Dung Le and Lei Zheng who were part of Steve’s care team, and researcher Dr. Bert Vogelstein. They’re world-renowned researchers as well as caring, compassionate physicians who keep Kelly’s Heroes updated on their work.

 Kelly’s Heroes considers their work as taking care of Steve’s unfinished business.

They are grateful to be a member of the World Pancreatic Cancer Coalition and for the support and inspiration shared among its members.

To learn more about Kelly’s Heroes, visit their Member Page

               

 

 

Member Profile: My Everest ODV

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Luigino Sala, with a beloved landscape of mountains, the founder of My Everest.
My Everest ODV, standing for “Organizzazione di Volontariato” (Voluntary Organization), is a non-profit association based in Rivolta D’Adda, Italy. Established in 2015 from the idea of Luigino Sala, who was sadly dying of pancreatic cancer, with a vision to empower individuals and communities into believing in scientific research, the organization draws inspiration from the Everest mountain, symbolizing the challenges that people with cancer face and the heights they can reach with the right support. Their payoff is what Luigino always said: “I hope, I dream, I live” in order to encourage supporting scientific research.

 

The association wants to be the reference for pancreatic cancer patients and has two main goals:
  • Provide information on the disease with particular attention to clinical trials, new therapies and prevention
  • Support scientific research projects through fundraising.

Ongoing Projects

Thanks to the support received so far, the Association has been able to finance the presence of a data manager involved in the analysis of specific clinical studies on pancreatic cancer at the Pancreas Center of the IRCCS Ospedale San Raffaele in Milan, and supported an important research project on personalized medicine, PACT-21. They are very proud to be members of the WPCC.

Every year is a great pleasure to join the WPCC’s campaign and post information through their social media channels according to WPCC guidelines. Our goal is the same as the WPCC: spreading information to the population to teach how to recognize pancreatic cancer in a very early stage and increase the opportunities to treat it.

To learn more about the My Everest ODV, visit their Member Page

 

                  Dr. Michele Reni and Dr. Silvia Romi, the datamanager financed by us, showing My Everest payoff as testimonials.               Mrs Monica Rozzoni - My Everest President and Luigino Sala wife - together with Dr. Michele Reni anche Prof. Massimo Falconi from Pancreas Center from IRCCS Ospedale San Raffaele, Milan, Italy

 

 

Member Profile: Cancer Society PALEMA

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Cancer Society PALEMA was founded in 2015. People from the cancer profession took the initiative to start PALEMA as there was no association for these diagnoses to which they could refer their patients.

They have two areas of focus:

First – they support those already affected with a cancer diagnosis or their relatives/caregivers. They provide information, advice and news on their website https://palema.org/, they arrange support meetings for patients as well as caregivers mostly in digital format. They arrange several events every year covering all diagnoses – these can be physical events, webinars, or hybrid events. WPCD is their main event regarding pancreatic cancer – as is the month of November. They also have a support phone line for those who need someone to talk to and they have a closed Facebook groups where people can meet and discuss, give advice and hope.

Second – they are working hard in the field of advocacy to make changes in the healthcare system. They want to see a system where the patient is in in the drivers seat working together with other stakeholders. They want to have more influence in all fields such as research, healthcare. They want together, with politicians and other decision-makers bodies, to change the patients trajectory to a more seamless pathway from symptom via diagnosis and treatment to rehabilitation and in the best case scenario, a cure. If not a cure then the possibility to live a “normal” life with cancer as a chronic disease.

 

Ongoing Projects

PALEMA includes five different cancer diagnoses. Besides pancreatic cancer, which is their largest group, they represent cancers in liver, bile duct, stomach and esophageal (upper GI). These five diagnoses belong to what the EU calls “poor diagnosis cancers” with a combined 5-year survival rate below 30%. Pancreatic cancer, which is also called “a neglected diagnosis”(neglected with regards to survival, new treatments, research, and studies), is worst in class with a survival rate below 8%.

Their cancer diagnoses are extremely time critical. For those affected, time is of the essence and often the difference between life and death. Therefore, they refer to them as Emergency Cancer (Blåljuscancer® in Swedish), which means that they want their diagnoses to be treated as acute diseases that require immediate attention and treatment. What most of their surviving members have in common is that they have received care very quickly after a suspected diagnosis. You can read more about emergency cancers here: https://palema.org/en/types-of-cancer/emergency-cancer/.

They are also trying to influence decision-makers to ensure that their diagnoses receive more resources for research.

They have a website https://palema.org/ with a great amount of information for those affected. Besides the diagnosis information pages, they publish articles about the newest research, new studies, and other interesting information. They have a lot of recorded events and webinars in their archives, and they share patient stories (survivors to give some hope) and they have information about what you can do for yourself. Most information is in Swedish, but translation to English is in progress.

The WPCC can support PALEMA by sharing information about what happens internationally, the latest developments within the fields of precision medicine, and research and new studies about immunotherapy. Also sharing stories about hope, support with information and campaign material, and help with spreading the word to reach Swedish-speaking people living abroad.

They are looking forward to working with the WPCC in continued good cooperation to jointly support those affected and to fight for a cure for pancreatic cancer on an international arena.

To learn more about the Cancer Services PALEMA, visit their Member Page

 

                               

 

 

Member Profile: #PurpleOurWorld

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#PurpleOurWorld was founded in October 2014, after the death of wife, mom and sister Rochelle Goulburn. To coincide with the inaugural World Pancreatic Cancer Day, they asked everyone we knew to wear purple and share a picture on social media using the hashtag #PurpleOurWorld and also tweeted to a number of well-known Australian media personalities. Through their retweets they managed to amplify #PurpleOurWorlds message even further. We made it our mission to make as much noise as possible.

Their main areas of focus are to raise awareness, rather than money, as there were already well-known pancreatic cancer charities in Australia and when they started. They did not want to dilute the fund pool. Since they formed their charity partnerships, they have also formed The Australian Pancreatic Cancer Alliance. The Alliance meets quarterly to share ideas and projects, as well as collaborate on several initiatives and lobby the government for further funding and awareness. They dedicate their time to purely raising awareness, both on social media and with corporate organizations. Some campaigns have been big, for example, WPCD messaging in Westfield shopping centers in Australia, USA and UK, and some have been smaller, such as corporate organizations changing their signatures to purple for the month of November. On social media, they share facts, information about the pancreas, stories, and official WPCD communications and assets.

Ongoing Projects

Since #PurpleOurWorld is an awareness-raising initiative, they appreciate all the assets that the WPCC provides them, as well as the information sessions that have been available throughout the year. At the end of the day, they are about sharing information to educate the community, so as long as WPCC keeps providing resources, they will keep sharing them.

In the upcoming year,  #PurpleOurWorld is looking forward to working with the WPCC to motivate the global community to band together and help in raising awareness and funds for pancreatic cancer. They look forward to collaborating on an even deeper level with their fellow WPCC members in the coming year.

To learn more about the #PurpleOurWorld, visit their Member Page

 

 

 

 

Member Profile: NIPANC

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Northern Ireland Pancreatic Cancer (NIPANC) was set up in August 2018 and has its roots in a group of people affected by pancreatic cancer coming together for support and to raise funds to promote better diagnosis and treatment for future patients.  The charity’s work brings together families who have suffered losses from pancreatic cancer, families who are currently facing a diagnosis and survivors of the disease. NIPANC concentrates its research funding in Northern Ireland, working collaboratively with other charities to fund vital research and promote early diagnosis of the disease. NIPANC gives a stronger voice to families affected by pancreatic cancer in Northern Ireland. NIPANC is working to improve the outcomes of pancreatic cancer by:

  • Increasing public understanding of this cancer
  • Promoting awareness of the cancer’s signs and symptoms by both medical professionals and members of the public
  • Funding vital research
  • Supporting patients and their families

Ongoing Projects

In November 2022, NIPANC launched the first digital game to promote public awareness of pancreatic cancer; a joint event with researchers from Queen’s University Belfast and Focus Games Ltd. The free-to-use digital game aimed at informing as many people as possible about the disease in a more accessible way.

The game can be accessed here: https://www.whatispancreaticcancer.co.uk

NIPANC is currently developing another serious game for medical staff including nursing, doctors and pharmacy.

During the next year, they are working with the WPCC to raise awareness of pancreatic cancer in their part of the world as a recent survey conducted by NIPANC revealed an 86% increase in people being diagnosed with the disease. The audit published on Tuesday 9 May, was funded by local pancreatic cancer charity NIPANC with the audit work undertaken by the Northern Ireland Cancer Registry (NICR) at Queen’s University Belfast in partnership with HPB clinical staff in the Belfast Trust:

https://www.qub.ac.uk/News/Allnews/featured/NewNIauditintopancreaticcancerrevealscontinuedincreaseincases.html

To learn more about the NIPANC, visit their Member Page

 

 

 

 

Member Profile: The Elizabeth Coteman Fund

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The Elizabeth Coteman Fund was established in 2010 upon the death of beloved wife and mother Elizabeth Coteman from pancreatic cancer, to support those with a diagnosis of pancreatic cancer and their families. The charity also provides a legacy for a wonderful woman. Their main areas of focus include supporting the best possible quality of life for those affected by a diagnosis of pancreatic cancer, both individuals and families. It does this by providing, friendship, advocacy, emotional support, problem solving, financial grants, and bereavement support. The Fund also works in partnership with the research community, at two key UK locations, to support work into earlier diagnosis, better treatment options, enhanced pain management, and a better understanding of post-surgical gastroenterological issues. They are looking forward to working on common goals with the WPCC and continuing to be a WPCC member.

21/06/13 Gerald Coteman and his son Mark Coteman , who are both doing a triathlon for charity . Picture by David Johnson .

Ongoing Projects

Their current 3-year plan includes one central theme; namely to raise the profile of, and improve support for, the psychological and emotional impact of pancreatic cancer. Their aim is to encourage the adoption of early implemented holistic assessments throughout the NHS in the UK, with a strong emphasis on psycho-social support pathways – for patients and families.

You can support the Elizabeth Coteman Fund by continuing to maintain high profile campaigns world-wide for earlier diagnosis, better treatment options, and psychological and emotional support.

To learn more about the Elizabeth Coteman Fund, visit their Member Page