Member Profile: Pancreatic Cancer Hope Foundation

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Our Story

The Pancreatic Cancer Hope Foundation  is a nonprofit foundation dedicated to raising funding and awareness for pancreatic cancer as well as patient support for patients and their families. They are based out of Allentown, Pennsylvania.

Their foundation had its humble beginning about 15 years ago when a Pennsylvania woman by the name of Jenn Loconte started a 5K run in memory of her mother, Joan. The race was held annually and was called J’s Run in memory of her mother and another young woman who lost her life to pancreatic cancer. As the race grew, the board of J’s Run decided to expand our focus and create a foundation. The Pancreatic Cancer Hope Foundation was officially created in 2019. They continue to hold J’s Run on the 1st Saturday in May as our signature event and primary fundraising event.

 

Since inception, their foundation has raised thousands of dollars and they are proud to say that through their efforts we have helped establish the first pancreatic cancer specific support group  within the Cancer Support Community of the Lehigh Valley, PA. The support community continues to provide patient and family support for pancreatic cancer patients and their families and Pancreatic Cancer Hope Foundation provides annual support to continue this important service.

Over the years they have provided funding to Lehigh Valley Health Network in Allentown,  Pennsylvania, St Luke’s University Medical Center in Allentown, PA and Johns Hopkins Hospital In Baltimore, MD to help these institutions in their pancreatic cancer research efforts.

Their latest patient support project was to help create a nutrition bank at Lehigh Valley Hospital to provide much needed nutritional supplements to pancreatic cancer patients.

They were very proud to sponsor a symposium this past November where they were excited to host a speaker from Memorial Sloan Kettering Hospital to speak on the progress of the newest pancreatic cancer vaccine trials. Another symposium is planned for this coming November.

As well as providing financial support, another large area of focus for their foundation is promoting awareness of pancreatic cancer and it is their hope that though our efforts as well as through the larger efforts of WPCC we can continue to promote awareness and attention to this disease.

To learn more about the Pancreatic Cancer Hope Foundation, visit their Member Page

 

 

 

Member Profile: Pancreatic Cancer Aotearoa New Zealand (PCANZ)

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Our Story

PCANZ was founded in 2019, after their founder lost their Dad to pancreatic cancer.

 

The main areas of focus for PCANZ is support, education, awareness and fundraising.

Currently, PCANZ is helping to support the Gut Cancer Foundation in fundraising towards clinical studies, as well as research by the ASPERT team in pancreatic enzyme replacement therapy.

The WPCC can help support PCANZ by helping to raise their profile, as they are too small to pay for SEO and so there are many people in New Zealand who have no idea that PCANZ exists

They are looking forward its 5th birthday this year, and so they want to make the PCAM in November the biggest one yet, and raise as much money as possible towards their cause. New Zealand’s survival stats are extremely poor compared to the rest of the world, and so putting NZ on the global map would be super helpful.

To learn more about the Pancreatic Cancer Aotearoa New Zealand (PCANZ), visit their Member Page

 

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: Pancreatic Cancer Aotearoa New Zealand (PCANZ)

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Our Story

PCANZ was founded in 2019, after their founder lost their Dad to pancreatic cancer.

 

The main areas of focus for PCANZ is support, education, awareness and fundraising.

Currently, PCANZ is helping to support the Gut Cancer Foundation in fundraising towards clinical studies, as well as research by the ASPERT team in pancreatic enzyme replacement therapy.

The WPCC can help support PCANZ by helping to raise their profile, as they are too small to pay for SEO and so there are many people in New Zealand who have no idea that PCANZ exists

They are looking forward its 5th birthday this year, and so they want to make the PCAM in November the biggest one yet, and raise as much money as possible towards their cause. New Zealand’s survival stats are extremely poor compared to the rest of the world, and so putting NZ on the global map would be super helpful.

To learn more about the Pancreatic Cancer Aotearoa New Zealand (PCANZ), 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