Member Profile: Lavlav Foundation

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In 2019, we attended the WPCC Annual Meeting in Miami for the first time. This was our initial exposure to the incredible work of the foundations that help pancreatic cancer patients and their families. As a result, we quickly realized that this type of foundation was also needed in Israel, where we have about 1,000 new pancreatic cancer patients every year. The Israeli Lavlav Foundation was established by a group of volunteers, all of whom have some connection to the disease.

These are the Lavlav Foundation’s main programs and resources:

Support group for patients: This group meets every week in-person or on Zoom, guided by a spiritual caregiver. This allows patients to share their feelings and experiences, aiming to provide patients with the strength to cope with the disease.

Support group for caregivers: This group was established following our understanding that the caregivers and families are also in need of support through this journey.

Hotline: Our hotline offers a listening ear, as well as direction and support for patients and caregivers.

Website: Our website offers a source of information about the disease, including symptoms and treatments of pancreatic cancer and insight aimed to help patients and families through their journeys. We also include dietary advice, inspirational stories from patients, a guide to social rights such as sick days and tax relief, and much more.

Community: We have built an online community of hundreds of participants, including both patients and caregivers, that serves as a platform for sharing information, asking questions, and supporting each other to ensure that no one feels alone.

Zoom meetings: Lavlav hosts monthly meetings with various pancreatic cancer professionals, including oncologists, surgeons, social workers, dietitians, and more. These meetings allow the participants to ask all of their relevant questions and acquire useful knowledge.

The Lavlav Foundation is based on donations and has no other financial support. This is our main limitation which we really want to overcome.

Our goal is to reach everyone that is affected by the disease in Israel and to offer them help and support.

We are eager to learn from other foundations and to implement their vast knowledge in Israel as well.

To learn more about the Lavlav (“LoveLove”) Foundation, visit their member page.

 

Member Profile: Pants Off Racing

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History

Pants Off Racing (“POR”) was founded in 2012. Our organization had been active for many years before, but we didn’t register as a 501c3 until 2012.

POR was formed because Nancy “Pants” Amato was diagnosed with pancreatic cancer in the winter of 2006. Upon diagnosis, Nancy Pants had such an overwhelming support system that her children and their friends were inspired to form a community that would provide similar support to others diagnosed with pancreatic cancer. We believe that by providing support for pancreatic cancer victims and their families, we can improve and significantly diminish the harsh realities they face. We saw a gap in the assistance that patients, and their families, receive when they are diagnosed with cancer, with majority of funding going to Pancreatic Cancer research, so POR fills that gap.

Providing compassionate support to pancreatic cancer victims, and families, is how we are going to fight this disease. We have chosen to use all funds received by donors to directly support families, not research, because we believe that our greatest impact will be the interactions we have with those who need it right now.

 

Areas of Focus

POR provides direct emotional and financial assistance to those that request and require it. Typically, we begin with a care package to initiate the relationship and help bring a smile to the cancer patient. As we get to know the individual or family better our support may expand to covering travel expenses, groceries, sending holiday and birthday gifts, and much more allowing the patient to focus on their treatment and recovery.

Our Board of Advisors are also available to share their experiences with the families that are referred to POR. One of our Board members is currently fighting pancreatic cancer. He finds himself talking with most of the patients that reach out to us. His experience has been helpful to others that are navigating their treatment options.

All of our POR members are volunteers that dedicate themselves to creating a personal connection with the families and individuals we support. Our members span national wide, which allows us to locally connect with our families. Local activities focus on spending quality time with our families and can range anywhere from casual meals or meetups to indoor skydiving and Sea World — we try to make it personal to the individual.

Current Projects

Currently we are working on creating an advocate plan for cancer patients. It is our experience that many of the people looking for assistance are acting as their own advocates. With limited energy during treatments, we would like to have a plan that would help someone close to them assist with their journey. We want the advocate to understand what questions to ask the doctors, best practices in navigating the healthcare system and when to reach out to POR when they have a question they can’t get answer to.

POR has also noticed the importance of great palliative care. The patients that we work with are often unfamiliar with the services that are offered. In each conversation we have with patients, we ask if they are participating in a palliative care program. We have a board member that was diagnosed with stage 4 pancreatic cancer nearly 3 years ago. His hospital system in Seattle provides great palliative care, and he swears by the treatments for his recovery and health. He tells all the patients he speaks with to get out in front of pain management. POR will continue to learn more about palliative care and share this with the cancer patients we assist.

 

Sentry Club

Sentry Club is POR’s community outreach efforts. Most charities and nonprofits focus on research, leaving a significant need for personal assistance. Our goal is to provide families with a network of support, resources, and a strong community outside the everyday hospital and treatment centers. Most families come to us because there are limited to no options to receive direct assistance for their needs.

Here’s a little story about someone we met recently and has become part of the POR community:

Terri Armstrong found POR via the Pancreatic Cancer Action Network (PanCAN), and really has no one else to go to. She contacted PanCAN in Manhattan Beach, and they connected her to the best place she could go ASAP – PANTS OFF RACING (“POR”)!

Recently, she was diagnosed with Stage 4 terminal pancreatic cancer. She needed hygiene supplies, and some hope. She requested some basics from POR, to get by. She was worried about the chemo drug she was prescribed. She heard bad things about it, and was worried sick about having a bad reaction to it. Not only did she not have family to fall back on, she was acting as her own advocate. In the process of learning that she had cancer, Terri lost her apartment while she was getting treatment. She was homeless and also had some major issues with her vehicle.

What happens when someone comes to us? We fight for them, and we respond right away.

Terri sent us her POR assistance request form so we knew what she needed from us. Based on her needs we sent her some Walmart gift cards, compression socks, and a super warm blanket for her treatment days. We worked with the Toyota dealership to fix up her car so she had a reliable car to get to her appointments.

One of the most important byproducts of finding a community that could support her was that she regained hope. She needed someone, and POR answered the call. It wasn’t one person, or donation, it was a ladder of people that care — people she will never see, or know about, usually: volunteers, donors, and the people that have gone through what she is going through.

We all serve an important role. Recently, she sent us a letter. She is hopeful, and her outlook is much different than the first time we spoke to her. Terri has found the hope she didn’t have before she reached out to PanCAN or POR. Even if things aren’t looking great for her, she has a community to lean on.

Most recently she met a couple of all-time great POR members. Eric Altman was able to meet with Terri and deliver her some much needed Christmas joy. He even delivered her a fathead cutout of her head that was meant to cheer her up when she had chemo days.

Then, out of the blue, Curt Moothart took the time to meet her after one of her appointments. She doesn’t have any family close by to get her through these days, so this was a special occasion. Having someone to just be there to say they are cheering you on, and knowing you have support, has to feel amazing.

What a cool community this is, and it is stories like these that would make Nancy Pants proud. We’re sure she is smiling down on Terri, and her spirit lives on in acts like these.

 

How can the WPCC support your organization and its goals?

We want to always know what treatments, and potential clinical trials, are being offered to cancer patients. There are a lot of new trials and advances in treating pancreatic cancer, but we don’t know when it is approved for treatment. Patients, and their families, want to know what their doctors aren’t telling them. More information that can help them live longer is always at the top of the list.

What are you most looking forward to accomplishing with WPCC over the next year?

WPCC continues to help connect us to organizations and medical professionals that know a lot more about pancreatic cancer than we do. It is important to stay on top of all the advances that are being made. Being aware of the advances in pancreatic cancer helps us to be a better resource to those that need our help.

To learn more about Pants Off Racing Inc., visit their member page.

Member Profile: Let’s Win Pancreatic Cancer

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WPCC story

Let’s Win Pancreatic Cancer is an online platform that breaks down barriers between patients, doctors, and researchers so that everyone diagnosed with pancreatic cancer has easy access to the latest information about the best treatment options. Instead of sharing dismal statistics, Let’s Win inspires hope in patients and families by sharing stories of long-term survivors.

With a dynamic new website, we are making it easier for patients to find the information they need for the pancreatic cancer journey.

How We Started

When public relations executive Anne Glauber was diagnosed with stage IV pancreatic cancer in 2014, she found that one of the most devastating issues in pancreatic cancer was a dearth of information available to patients on potentially life-extending treatments. She vowed to address this void, and together with her medical team created Let’s Win, which launched in May 2016. Anne passed away in 2017 but Let’s Win lives on as her legacy, continuing to grow and to reach more pancreatic cancer patients, caregivers, and doctors.

Under the leadership of Founding Executive Director Cindy Gavin, the website has grown from 15 stories at launch to more than 650 articles about all aspects of treatment and life with pancreatic cancer. We have featured the work of more than 170 pancreatic cancer experts from over 80 institutions. We have also shared the amazing work being led by more than 15 advocacy partners. Over 200 patients have told their stories and we have produced over 50 videos featuring long-term survivors.

Leading the Way Forward

As an online program we reach patients through a dynamic website and robust social media program in both English and Spanish. Our place within the pancreatic cancer community is a communications voice. We amplify the work of researchers, share stories of patients undergoing different treatments, educate patients and families about pancreatic cancer, and explain ways to manage life during treatment.

Our new website includes tools that make it easier for all patients to access information. We have special features for newly diagnosed patients, people at higher risk because they have diabetes,  and interactive diagrams that explain the symptoms and stages of pancreatic cancer.

Too often when patients are diagnosed they are told to get their affairs in order because not much can be done. Our mission is to raise awareness and reach all newly diagnosed patients and provide them with actionable information they can bring to their doctors.

To view Let’s Win Pancreatic Cancer’s new website, click here.

Member Profile: DiCE

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Digestive Cancers Europe (DiCE) is a European non-profit umbrella organization of nearly 40 national Member Organizations representing patients with digestive cancer — colorectal, gastric, liver, oesophageal, pancreatic, and rare cancers.

DiCE is committed to advancing diagnosis and medical treatment, advocating high standards in clinical practice, education, and research, and supporting patient care for a better quality of life. DiCE’s vision is to see fewer people in Europe suffering from digestive cancers.

They are determined to raise awareness about pancreatic cancer and gastric cancer, and invite you to be part of their policy event on 15 November 2022 from 15H until 15H CEST at the European Parliament.

Their ambitious agenda to get European policymakers involved in helping more patients will be discussed in the upcoming meeting. With a large community of people from all over Europe, they are sure that they can bring awareness about both cancers.

This meeting will also serve as a timely discussion point regarding the proposed updated Council cancer screening recommendations, including gastric cancer for the first time.

If you would like to receive their monthly newsletter about digestive cancers, be informed about the upcoming meeting in the European Parliament, and have direct contact, please subscribe here.

You can learn more about DiCE by visiting their website.

Member Profile: The John E. Sabga Foundation

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The John E. Sabga Foundation is a non-profit foundation started in Trinidad and Tobago. The Foundation honors John Edmond Sabga who died at the age of 56 in January 2017 after a valiant 10-month battle with pancreatic cancer. John was a well-loved and popular person and was known to many through his years in the restaurant industry – starting in the late 1980s in Los Angeles (AL AMIR LEBANESE Rest) where he spent 20 years and to his return home to Trinidad where he forayed back into the restaurant business again with Trotters Sports Bar and Buzo Italian. His love for Vineyard Vines clothing earned him the nickname “the Whale.”

The Foundation’s main goal is to bring awareness of this dreaded disease to the population of their island, and to educate their doctors and medical fraternity on the latest advancements in pancreatic cancer. They do so by bringing world-renowned experts to Trinidad for their annual “Distinguished Lecture Series.” Another important mission of the John E. Sabga Foundation is raising money for research into a cure and early detection test. To date, they have sent over $650,000 USD to various doctors and research facilities in the USA to aid in these efforts.

Next 16-18 March 2023, they will be hosting a Pancreatic Cancer Symposium in Trinidad, along with their 2nd HOPE GALA in collaboration with the Medical College of Wisconsin’s LeBahn Pancreatic Cancer Program, headed by Dr. Douglas Evans. They expect o have at least five world authorities on this disease speak at the symposium. They would love to have some representation from members of the WPCC to join them in supporting their global effort as a Coalition in fighting pancreatic cancer.

The John E. Sabga Foundation also offers navigation assistance and support to anyone in need of advice as well as advocates for patients with nurses, doctors, and healthcare professionals to speed up appointments and critical care. Trinidad is a third-world country that offers free medical services through their national healthcare system, and this can pose many challenges at times for under-privileged citizens. They are currently petitioning the Ministry of Health to add ABRAXANE and LYNPARZA to their national formulary, making these essential drugs available to their citizens in their fight against pancreatic cancer.

The John E. Sabga Foundation (JESFOUNDATION) is committed in its mission to bring HOPE to future generations. They are proud to be part of the World Pancreatic Cancer Coalition.

To learn more about the John E. Sabga Foundation, visit their website.

Member Profile: The Griffith Family Foundation & Sideline Cancer

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The history of the Griffith Family Foundation is a tragic but inspiring chapter in the story of Greg and Cathy Griffith. Greg passed at age 50 after a heroic 19-month battle with pancreatic cancer. It was two family friends — siblings, Amanda and Luke Ottaway — that in 2010 suggested to Cathy the idea of having a fundraiser for pancreatic cancer research. Their idea bloomed into a committee that formed and lead the first “Griff’s Run and Gun for a Cure.” That first year, they were able to raise $30,000 for pancreatic cancer research through the efforts of many within the local community. The success of this event soon led to the founding of the Greg and Cathy Griffith Family Foundation.

 

 

Since 2010, the Griffith Family Foundation has donated more than $300,000 to support pancreatic cancer patients and research efforts. They have many fundraising and awareness campaigns throughout the year, such as their “Annual Sideline Cancer Golf Tournament” and sponsoring their Sideline Cancer basketball team in “The Basketball Tournament” (TBT), an eleven-member team made up of professional basketball players who come together to play in a highly visible, nationwide, single-elimination tournament. In addition, Sideline Cancer has become a major, ongoing campaign that has become their signature awareness and fundraising platform.

 

   

 

The Sideline Cancer TBT team has participated in The Basketball Tournament — televised internationally on ESPN — since its inaugural debut in 2014. Sideline Cancer is the only team to have participated in all TBTs since its debut,posting a record of 13-8, making 3 Sweet 16s, 1 Final Four, and Championship Game appearance.

Through the efforts of the Griffith Family Foundation and Sideline Cancer, it’s Cathy’s desire to help change our world and the outcome of pancreatic cancer by uniting us all in the fight to Sideline pancreatic cancer.

 

To read more about the Griffith Family Foundation, click here.

To read more about Sideline Cancer, visit their website.

 

Member Profile: The Korean Pancreatic Cancer Network

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In 2015, the Korean Pancreatic Cancer Network (KPCN) was founded by a group of pancreatic surgeons in Korea with the common goal of increasing social awareness of pancreatic cancer. The mission of the KPCN is to promote prevention and early detection of pancreatic cancer, support and give hope to patients and families, and support research of pancreatic cancer in order to achieve their vision of 1) decreasing incidence of pancreatic cancer, 2) increasing early detection, and 3) improving treatment outcomes.

To reach these goals, the KPCN has held the World Pancreatic Cancer Day Campaign every November since 2015. During the event, various lectures are delivered to the general public (including patients and families) by doctors, nurses, nutritionists, and social workers. These lectures cover a variety of topics including — but not limited to — information about the disease and treatments, patient and family care, and support, including nutritional care. Financial support is also provided for those who are in need and eligible. The campaign prides itself for providing continuous support in understanding everything that a patient, patient’s family, or the general population wants to know about pancreatic cancer. The campaign continued to take place during COVID-19 virtually with active and engaging lectures as in-person events could not take place.

The activities of the KPCN are not just limited during Pancreatic Cancer Awareness Month in November, as the organization provides continuous support with online consultations to patients and families through their official homepage. In addition to their website, the KPCN discusses the need for political support with socially influential figures to introduce and set politics that will help patients fight pancreatic cancer both medically and socio-economically throughout the year.

The KPCN is planning to return to an in-person campaign starting in 2022. This year, the KPCN is looking to hold its campaign on “Purple Island,” located on the southwest coast of Korea. This year’s event is not being held in lecture halls within tertiary hospitals in Seoul as they were done previously, but at a place with a purple theme, tying in perfectly with the colors of the World Pancreatic Cancer Day Campaign.

As KPCN’s members are mostly medical professionals, they are well-equipped with medical knowledge of pancreatic cancer. Through their collaboration with the World Pancreatic Cancer Coalition, KPCN hopes to learn about the different experiences and knowledge based in other areas (engaging the general public, producing effective education about pancreatic cancer, fundraising, etc.) to strengthen their organization and deliver more influential, engaging campaigns this year and in the future, while adding to the tradition that has been set and developed since 2015.

To learn more about the Korean Pancreatic Cancer Network, visit their website.

Member Profile: Associazione Nastro Viola

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Associazione Nastro Viola was founded in February 2015 by Francesca Mella and four other people that all lost relatives to pancreatic cancer. At the time, none of them had heard of pancreatic cancer and were shocked when they lost their family members just a few short months after initial diagnosis. They soon learned that pancreatic cancer is hard to detect at an early stage and knew something had to be done to both inform more people about the disease and advocate for continued research. This is why they decided to found Associazione Nastro Viola.

What are your organization’s main areas of focus?

“We mainly focus on raising awareness and offering initial support to people affected by pancreatic cancer and their families. We have a wide network of volunteers helping us to organize events to raise funds which we use to support young researchers and several projects.”

What is your organization working on that you’d like others to know about?

“We have recently won a grant which we are using to work on a website and an app which will contain information about pancreatic cancer, specialised hospitals, and a guide to treatment and clinical trials. The patients will also be able to access a forum and interact with people with the same disease.”

How can the WPCC support your organization and its goals?

“Being part of an international organization like the WPCC is crucial for us. We know we can share our experience with our members and learn a lot from them.”

What are you most looking forward to accomplishing with the WPCC over the next year?

“We have recently joined the WPCD Committee and we want to work hard on the WPCD campaign for November 2022. We believe the more we talk about pancreatic cancer, the greater the chances of an early diagnosis in the future.”

To read more about Associazione Nastro Viola, visit their website here.

Member Profile: The Gastrointestinal Society

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The GI (Gastrointestinal) Society is a national charity formed in 2008 on the groundwork of its partner organization, the Canadian Society of Intestinal Research (CSIR), which was founded in Vancouver in 1976. We receive national and international attention, simply because we have earned the respect of both the gastrointestinal medical community and Canadians who battle GI and liver issues daily.

We are committed to improving the lives of those living with GI and liver conditions, supporting research, advocating for appropriate patient access to healthcare, and promoting GI and liver health. We have been covering issues related to pancreatic health for nearly thirty years.

Our English and French websites received 7.8 million page views by 5.7 million unique visitors in 2021.

All our programs and services focus on providing Canadians with trusted, commercial-free, medically-sound information on gut and liver diseases and disorders in both official languages. Our BadGut® lectures (currently on hiatus due to the pandemic), quarterly Inside Tract® newsletter, pamphlets, and educational videos arm Canadians with the information they require to better understand and manage their specific needs. We also work closely with healthcare professionals and governments at all levels toward system-wide improvements in care and treatment.

We are excited to launch several new resources and initiatives in 2022. This includes a new pamphlet on pancreatic cancer, which explains the condition and its treatments in lay terms, with a focus on maintaining adequate nutrition during treatment. We are also expanding our online resources on nutrition and diet while living with gastrointestinal diseases and disorders.

Member Profile: PanKind

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About PanKind

PanKind, The Australian Pancreatic Cancer Foundation, is exclusively dedicated to pancreatic cancer with a mission to triple the survival rate by 2030 and dramatically increase the quality of life for patients and their families. We aim to achieve this through a strategic focus on raising awareness, collaboration to increase progress and investing in ground-breaking medical research. Since inception in 2008, we have invested over $11 million into pancreatic research at Australia’s top institutions and in 2021 alone we committed a total of $13.1 million of research funding. Our International Scientific Advisory Panel is comprised of international and local scientific and medical experts who are responsible for assessing our research investments.

When and why was your organization founded?

In 2008, Avner Nahmani and his wife Caroline established Avner Pancreatic Cancer Foundation to raise awareness and funds for pancreatic cancer research in the hope that future patients and their families would face better outcomes. In 2020, our name changed to PanKind, The Australian Pancreatic Cancer Foundation, but the vision to create a world free from pancreatic cancer remains at the heart of our organisation.

What are your organization’s main area of focus?

Research – We invest in ground-breaking research with a national collaborative approach and identify and invest in high-impact, strategic research projects as well as funding competitive research grants across the entire research pathway. We believe it is important to invest early in innovative pancreatic cancer research to build capacity in Australia, fast-track discovery and accelerate new treatments to patients.

National Patient and Cancer Hub – PanKind supports people impacted by pancreatic cancer by providing relevant information, valuable resources and a connection to others affected by the disease. The information we create is available to patients, their families and healthcare professionals in both print and online.

Advocacy – We advocate with and for the pancreatic cancer community for equitable, optimal and earlier access to diagnosis, treatment and care. We worked with the Australian Government and the research and patient communities to drive a plan of action resulting in the National Pancreatic Cancer Roadmap. As part of our ongoing advocacy work, we are committed to fostering clinical collaboration and equitable access to treatments and care across the country through our networks of excellence.

Awareness – We work to increase awareness of pancreatic cancer at a national level, to support earlier diagnosis and raise funds towards research.

What is your organization working on that you’d like others to know about?

This year we will continue to focus on funding the most promising research projects possible in the areas of Early Detection and New Treatments, and further develop valuable resources and information for patients and carers, easily accessible in our National Patient & Carer Hub. Recently we distributed over 75,000 information flyers to general practitioners across Australia, providing their patients with information about pancreatic cancer, the signs and symptoms, causes and risk factors and directing them to our website for more information and support.

PanKind partners with clinical trials to increase awareness of and access to new treatments and supportive care studies. We are currently collaborating on the following trials:

  • PROcESS Trial: The Pancreatic cancer Relatives Counselling and Education Support Service (PROcESS) Trial, in collaboration with QIMR Berghofer Medical Research Institute, which aims to determine whether having a nurse provide structured counselling and education to carers of people with pancreatic cancer helps them cope more effectively.
  • ASPERT study: The survey will identify who has been offered Pancreatic Enzyme Replacement Therapy (PERT). The pancreas is important in digestion and PERT is a treatment that can help people with pancreatic cancer digest their food.

 

How can the WPCC support your organization and its goals?

Our mission is to triple the pancreatic cancer survival rate by 2030 and dramatically improve outcomes for patients and their families. The WPCC can help us move toward this important goal by connecting us to other member organisations to learn more about best practices, share information that can accelerate positive impact and provide opportunities to collaborate and leverage international expertise. The WPCC importantly continues to amplify our global voice to raise greater awareness of pancreatic cancer, which will ultimately help to save lives.

What are you most looking forward to accomplishing with WPCC over the next year?

The first virtual annual meeting of the WPCC was an incredible activity that allowed us to hear about advances in research and advocacy and to have important discussions with our peers and the issues that people with pancreatic cancer face, all over the world. We are extremely excited about this year’s meeting and continuing with the themes and priorities identified previously. We are looking forward to another big World Pancreatic Cancer Day which seems to build in momentum every year and we look forward to seeing illuminated purple landmarks dominate social media again in November.

To learn more about PanKind, visit their website.