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.

Member Profile: The Rolfe Pancreatic Cancer Foundation

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The Rolfe Pancreatic Cancer Foundation was founded in 1999 by friends and family in honor of Michael Rolfe. What started in a living room as a small, community effort has grown into an impactful organization in the Midwest and together we are making a difference.

Rolfe’s 3 Pillars of Focus

  • Personalized patient and family support.
  • Funding research for early detection and treatment options.
  • Raising awareness of risk factors and symptoms.

Patient and Family Support

We, at the Rolfe Foundation, pride ourselves on getting to know patients and their families.  Every patient, every caregiver, is provided with personal and tailored attention to help with their journey.

We give patients and their families the exact connections and resources they need.

We’re at the frontlines, first speaking with families and then making the calls to the doctors and hospitals to expedite the referral process.

We remain with our families for continued support and guidance indefinitely.

 

 

Fundraising

Today, the Rolfe Pancreatic Foundation works toward accomplishing its goals with a caring and hardworking team led by Executive Director, Stacia Hart, an engaged and energetic board, and the passion and support of our community.  It is from the generosity of our community and partners that we’re able to make a difference.

Events

We have a variety of ways in which our community can make an impact; from individual donations, corporate partnerships and legacy gifts to DASH for Detection, our in-person events and  DIY Fundraisers.

 

 

Create Awareness

The Rolfe Foundation is part of the World Pancreatic Cancer Coalition. We partner with global leaders to take action and raise awareness. We have monthly webinars to educate and engage the community and medical professionals.

Our vision is to live in a world without pancreatic cancer.

 

To learn more about The Rolfe Pancreatic Cancer Foundation, click here.

 

 

Member Profile: Fondation A.R.CA.D.

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Fondation A.R.CA.D. was founded in France in 2006 by Pr Aimery de Gramont and granted the legal status of “publicly recognized foundation” by the French government in December of the same year. While there are a number of major organizations in France similar to the Foundation in the advocacy of cancer research, A.R.CA.D. stands out as the one organization that deals specifically with digestive cancers. With digestive cancers accounting for 25% of all deaths from cancer, A.R.CA.D.’s founders push for digestive cancers to be given their proper recognition among cancer research.

Upon its founding in 2006, Fondation A.R.CA.D. stands by three major goals:

  1. To make the general public and health workers sensitive to the need for prevention and early screening of digestive cancers.
  2. To promote improvement of patient care and clinical research in the area of digestive cancers.
  3. To provide better information and support to patients suffering from digestive cancers.

They work to accomplish these goals by eliciting discussion between medical specialists, coordinating action programs associating both public and private partners active in the area of digestive cancer research, conducting informational campaigns for the general public, and supporting large-scale screening for digestive cancers — all to help spread awareness and allow for more options in the area of digestive cancers.

Their founder, Pr Aimery de Gramont, says, “One of my objectives in creating this foundation is to reduce the fear of the unknown and to explain that, despite some degree of uncertainty associated with any research, participating in a clinical trial does not mean being used as a guinea-pig. Substantial progress is being made in therapy but the most promising drugs are often only available under research protocols.”

To read more about Fondation A.R.CA.D. on their English website, click here.

To read more about Fondation A.R.CA.D. on their French website, click here.

Member Profile: Robert E. Reed Gastrointestinal Oncology Research Foundation

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Pictured above: The 2021-2022 Reed GI Foundation Junior Board

The Robert E. Reed Gastrointestinal Oncology Research Foundation was formed in 2002 while Robert Reed was battling pancreatic cancer. Mr. Reed felt strongly that creating a focus on GI cancer research and patient care would accelerate the discovery of a cure. While Mr. Reed ultimately lost his battle with pancreatic cancer shortly after the foundation’s conception, his family and friends continue to advocate for awareness and understanding about all gastrointestinal cancers. Their first fundraising event, “Finish the Fight” Iron Bowl Party, was held in November 2004 and has since become an annual event.

 

Words from Carolyn Reed:

“With the help of Dr. Martin Heslin, Robert fought a good fight and ‘Marty’ gave him another two years with us. My husband knew about our plans to establish the foundation and he, in fact, made the first contribution. Our goal initially was to raise one million dollars for Marty’s research lab. The foundation has exceeded that goal and is contributing to not only research, but to the interdisciplinary effort.”

 

If you would like to read more about the Robert E. Reed Gastrointestinal Oncology Research Foundation, visit their website here.

Member Profile: EuropaColon Poland

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Pictured Above: Founder Iga Rawicka
EuropaColon Polska was established in March of 2017 and is an affiliate member of Digestive Cancers Europe. Our goal is to increase awareness of digestive cancers amongst the general public. Previously our work had focused on colorectal cancers, but in seeing a need for raising awareness for other digestive cancers, we have become an advocate for all impacted by digestive cancers.  We are the only patient advocacy group in Poland that focuses on pancreatic cancer.
As an organization, we aim to raise awareness of the signs and symptoms of pancreatic cancer as well as support Polish pancreatic cancer patients, survivors, caregivers, and healthcare providers. To do this we provide information and resources on our website about pancreatic cancer and are active participants in Pancreatic Cancer Awareness Month every year. In 2020, we actively participated in World Pancreatic Cancer Day(WPCD). We emphasized the importance of early detection and the importance of consulting a family practitioner if any symptoms present. We were supported by private, governmental, public, and corporate entities who advertized our educational materials on their websites and social media platforms. We started a new Polish Facebook page “RAK TRZUSTKI”, to help us better connect with pancreatic cancer patients in Poland. This page facilitates communication and resource sharing between our organization and those in need of our resources. Additionally, our ‘Light It Purple’ campaign was very successful, as some of Poland’s most well-known landmarks were lit purple: Slasko-Dabrowski Bridge in WARSAW, Wroclaw Stadium in WROCLAW, Kosciuszki Overpass in GDANSK, as well as the corporate building WAGO in WROCLAW. This is only the beginning of “Light it Purple” in Poland.
Through these projects, we have gained support and interest in WPCD 2021 and we are eagerly awaiting the turn-out. In addition to projects associated with WPCD and Pancreatic Cancer Awareness Month, we have successfully received funding, such as the ImpactPANC grant,  for projects that will further support pancreatic cancer patients in Poland. This initiative aims to improve communication between patients and physicians by hosting a series of workshops at oncology centers across Poland. We are designing a communication guide for medical staff to facilitate more effective communication with pancreatic cancer patients and caregivers. Additionally, we will survey patients to gain a better understanding of their knowledge regarding their cancer diagnosis,  treatment, and inquire about which communication styles they find most effective. In 2021, we will start a campaign titled; “Where is Pancreas?”. As we have realized that a majority of the general population doesn’t know where the pancreas is in our body. This will involve a video that involves a detective who is looking for the pancreas, the detective works closely with an oncologist, who will try to help locate the pancreas and the source of the patient’s symptoms.
To learn more about EuropaColon Poland, visit their website here.

Member Profile: Charlotte Pancreatic Cancer Alliance

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Latest research shows that 97% of Americans now have a smartphone.  This represents nearly 300 million devices and a level of connectivity never seen before.

Yet despite this unprecedented level of connectivity and access to information, the vast majority of Americans know very little about pancreatic cancer, the third leading cause of cancer-related deaths in the U.S.

Founded in 2020, the Charlotte Pancreatic Cancer Alliance was created to increase awareness of the disease with a hyper local focus on the fast-growing Charlotte, North Carolina region located in the Southeast USA.  With a regional population of 2.9 million, Charlotte is recognized as one of America’s fastest growing cities with a 15.2 percent increase in population since 2010.  The Charlotte Pancreatic Cancer Alliance wants to tap into this fast-growing population, and its connectivity to smartphones, to create greater awareness.

To meet this goal, the Charlotte Pancreatic Cancer Alliance executes our mission with a focus on 3 things:

  1. We build community. We use our knowledge and relationships to build and connect the Charlotte region’s diverse pancreatic cancer community.
  2. We share stories. Storytelling is the best way to teach, persuade and build understanding.  We use stories to connect the greater Charlotte region to the pancreatic cancer cause.
  3. We create purple buzz. We use our expertise in marketing, social media, and public relations to create local buzz and awareness for pancreatic cancer.

Our logo has great meaning to our three founders (Grace Lynch, Patti Weber, and Mark Weber) and reflects our organization’s commitment to raising awareness.  Charlotte is known as the “Queen City,” and the crown is a popular symbol that ties to the city’s history.  The three jewels inside the crown represent the three family members that our founders lost to pancreatic cancer. Grace lost her niece, Carmen Reyes, to the disease.  The Webers are a married couple.  Patti lost her father, Jim Benson, and Mark lost his mother, Shirley Weber, to pancreatic cancer.

The Charlotte Pancreatic Cancer Alliance raises awareness for pancreatic cancer 365 days of the year using a variety of platforms.  We invite you to view our 2020 Impact Report to see how we created awareness during our first year of operations amidst the global pandemic.

Please visit our website and follow us on Facebook, Instagram, Twitter, LinkedIn and YouTube.  We invite you to like and share our content as we work together as one World Pancreatic Cancer Coalition family to increase awareness and rewrite the story of pancreatic cancer.

To learn more about the Charlotte Pancreatic Cancer Alliance, visit their website here.

Member Profile: Dawn Hill Fight Foundation

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Pictured above: Participants in the annual Dawn’s 5k Dash

In 2016, Dawn Hill was diagnosed with Stage 4 pancreatic cancer at the age of 47. After obtaining a second option, she began a clinical trial at Johns Hopkins Hospital in Baltimore, MD. Dawn fought like a feisty WARRIOR for 16 months, and even worked full-time for 8 of those months, before passing away at the young age of 48. During Dawn’s journey she was surrounded by her Running Warriors Run Group who spent 4 days a week together (for nearly 3 years) training for various local races. Dawn always spoke of getting better and PAYING ALL THE GOODNESS FORWARD that was showered upon her during her journey!! She always said patients battling cancer shouldn’t be worried about their finances, but instead should have their mind and strength saved for their FIGHT!

In her honor, her wife Rebekah Cugle, along with some of the Running Warriors group members, created the Dawn Hill Fight Foundation, Inc. (DHFF) and were officially incorporated in 2018 as a 501c3 non-profit organization.

With the help of corporate sponsors and local businesses, DHFF hosts an annual 5k Run/Walk in Maryland, with a virtual option available too! All race registration monies collected are provided directly to patients battling pancreatic cancer. Rebekah, the President of DHFF, calls each patient and connects with them on a very personal level, learning about their diagnosis, journey, families, treatments, etc. while creating long-lasting friendships with many patients and their families.

DHFF also holds additional fundraisers throughout the year at local restaurants and on Facebook. Additionally, they fundraise through Amazon Smile as a designated charity, to continue their ‘giving back and paying it forward’ to patients while waiting for the next Dawn’s 5k Dash fundraiser to Kick-Off!

Dawn touched so many lives and quickly made a huge impact on others! Inspiring, encouraging, and motivating them, daily, through shared Facebook posts and stories.

We hope to keep her spirit alive and are committed to honoring her wishes of Paying it Forward through our many fundraising efforts.

As we press on, we hope to continue to grow and help as many patients as possible!

Helping Families — Raising Awareness — Providing Hope

Instagram — dawns5kdash

Facebook — Dawn Hill Fight Foundation Page

To learn more about the Dawn Hill Fight Foundation, visit their website here.