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.

Member Profile: RicerChiAmo Onlus

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One of the founders of RicerChiAmo Onlus, Gian Luca Baiocchi, speaking at their annual Fun for Charity event in 2019.

RicerChiAmo Onlus is based in Brescia, Italy, and was founded in 2016 by Gian Luca Baiocchi (ASST Spedali Civili di Bescia and Univ. of Brescia), Lidia Beltrami, and Paola Masserdotti. RicerChiAmo Onlus was founded on the statutory aim of promoting scientific research on digestive system neoplasms.

RicerChiAmo is built on the belief that scientific research is an essential weapon to beat cancer, a universal way, because scientific results – in the medical field and others – are shared indiscriminately across countries and latitudes and are long-lasting, as they are verifiable and usable by everyone, equally to develop new knowledge.

RicerChiAmo devolves all proceeds from donations to the funding of new national and international research projects, fellowship for young researchers in support of initiatives to be started up or already started up, collaborating with hospitals and research centers around the world. They also promote initiatives to create awareness on the importance of screening tests and early diagnoses and talks on the risk and protection factors or cancer of the digestive system.

Learn more about RicerChiAmo at their website.

 

Member Profile: PASYKAF

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PASYKAF Staff Group Photo

PASYKAF, The Cyprus Association of Cancer Patients and Friends was founded in 1986, by 21 people with cancer experience. The voice of our association was first heard through the words of Dr Anna Achilleoudi, founder and president of the board who stated in public: “I am a breast cancer survivor, cancer is curable if diagnosed and treated early. I am a living example.”

Throughout the years, PASYKAF has evolved into an organization of thousands of members and supporters, providing professional health and home care services to cancer patients and their loved ones, as well as awareness to the public.

PASYKAF established services based on European guidelines and standards which brought comfort, boosted hope whilst maintaining the patient’s dignity through the hardship of cancer. Our goal is to offer cancer patients and survivors a holistic management of the disease through specialized supportive and palliative care services, in order to improve quality of life.

Our associations’ services are offered free of charge to any patient regardless of nationality, religion and language. These include:

  • Home nursing care
  • Home Palliative care
  • Psychological support
  • Social support
  • Physiotherapy
  • Lymphoedema Clinic
  • Patients Transport
  • Bereavement support

In addition to them, in 2016, a gastrointestinal cancers group was created under the umbrella of PASYKAF, named ‘althea’. ‘Althea’ GI group has as its mission to reduce gastrointestinal cancers incidents, improve survival rates by focusing on early diagnosis and improve the quality of life for all patients with gastrointestinal cancers in Cyprus. ‘althea’s’ work includes organizing educational courses/conferences for health care professionals, awareness campaigns, promoting early detection, safeguarding patient’s rights for best available treatment, medication and consumables. ‘Althea’ is also working closely with the Ministry of Health for the National Colorectal Screening Program proper implementation whilst seeking to create a specialized Gastrointestinal Cancers Centre.

PASYKAF has been a member of World Pancreatic Cancer Coalition for the past 5 years and during this time we have shared best practices, grew through skills and capacity building workshops, played an active role in the formation of WPCC global awareness campaigns and participated in policy changes for pancreatic patients.

Last but not least, we have to express our gratitude as WPCC gave us the opportunity to apply for the ImpanctPanc award by Celgene in 2018. The project named ‘Empowering Caregivers of Pancreatic cancer patients for Enhanced Patient Outcomes’ has managed to be amongst five other winners and was awarded 20,000 US dollars. The idea is about introducing Expert Nutritional Guidance to pancreatic cancer patients and caregivers, in order to consult and provide practical guidance regarding nutritional problems, redress symptoms and address caregivers’ and patients’ needs.

We know that this was just the beginning and we are looking forward to accomplishing even more for pancreatic patients with the World Pancreatic Cancer Coalition support.

For more information about Cyprus Association of Cancer Patients and Friends you can visit: https://pasykaf.org/en/home-page/