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.

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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.

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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.

 

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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/

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Member Profile: Michael W. Oglesby Foundation

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Participants in Michael W. Oglesby Foundation’s annual Faj Squad 5k walk/run that has raised over $40,000 for pancreatic cancer research in the last 5 years.

When and why was your organization founded?

Our brother, Mike, was born and raised in Dubuque, Iowa. He graduated from Wahlert Catholic High School and the University of Iowa with an engineering degree. In November 2015, at age 52, he was diagnosed with pancreatic cancer and died exactly 60 days after diagnosis in January 2016. We decided to channel our grief to find ways to prevent this from happening to other families. The Michael W. Oglesby Foundation (MWOF) was established in April 2016.

Our foundation’s mission is to bring hope and treatment to everyone touched by pancreatic cancer. Our foundations vision is a world where pancreatic cancer is the most curable cancer.

 

What are your organization’s main areas of focus?

MWOF main areas of focus is to raise awareness of pancreatic cancer.  Our goal is to raise funds that support research for early detection, effective treatments, and a cure. We serve pancreatic patients and their families in the Dubuque community and the surrounding areas. We find it important for the funds raised to stay in the area to benefit local patients and families. For this year’s 5K our goal is to raise $15,000 to fund researcher, Dr. Sean Ronnekleiv-Kelly at UW Madison, for his pancreatic cancer research projects.

 

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

MWOF will be hosting our annual Faj Squad 5k walk/run~have fun event. “Faj” is what Mike’s daughters affectionately called their dad, Mike. We raise money by inviting participants to sign up for the walk/run and purchasing Faj Squad t-shirts. W­­e honor local families and survivors and provide pancreatic cancer educational activities. Our fun, uplifting event is run by volunteers and pancreatic cancer advocates. Our event has over 350 participants, both in person and virtually, with the momentum continuing each year. Over the last five years:

  • We’ve raised over $40,000 for funding pancreatic cancer research at a leading clinical and academic center, UW Madison.
  • We’ve engaged the city of Dubuque to proclaim a day in November (November is pancreatic cancer awareness month) for pancreatic cancer.
  • We’ve become members of the Middleton Society. The philanthropic society of the University of Wisconsin School of Medicine and Public Health that honors friends who support hope and encourage scientists who translate hope into action.

 

How can the WPCC support your organization and its goals?

The World Pancreatic Cancer Coalition can help support MWOF by providing access to the most up to date data to share with our audience. We also look forward to having access to universal resources that convey the same message across diverse platforms with the unified goal. We want to be recognized not only in our community, but spread out to the Midwest and across the United States. Support from the WPCC can help elevate our current mission and reach a broader audience.

 

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

MWOF is looking forward to collaborating with the Word Pancreatic Cancer Coalition. We want to strengthen our efforts in raising awareness with the latest data and updated information regarding pancreatic cancer. We are looking forward to changing the conversation about pancreatic cancer and we want to impact lives and be known as change agents to improve the overall survival rates of pancreatic cancer patients.

To learn more about the Michael W. Oglesby Foundation, visit their website.

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Member Profile: EuropaColon Portugal

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EuropaColon Portugal was created in 2006 in Porto with the primary function to help reduce the number of deaths from intestinal cancer and to provide support to patients and family members and improve their quality of life.

Objectives of the Association:

  • Promote the screening and early diagnosis of traceable digestive cancers
  • Advise and support the people who suffer from the cancers that they cover
  • Promote the improvement and extension of medical care
  • Contribute to the dissemination of information about these diseases to the public
  • To promote research on the causes and treatment of these diseases
  • Cooperate with doctors, nursing and paramedic staff, the pharmaceutical industry, and public and private entities
  • Cooperate with similar associations at home and abroad
  • Create a center for information for all patients and stakeholders
  • Proceed to issue an informative journal bulletin

Read more about EuropaColon Portugal here.

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Member Profile: PanKind

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PanKind unites the nation with their flagship Put Your Foot Down walks in 7 cities across Australia

Avner Nahmani and his wife Caroline established the Foundation in 2007 after Avner was diagnosed with inoperable pancreatic cancer. Caroline, their close friends, and a group of passionate volunteers set about to reach an almost impossible dream of raising $1 million for medical research, which they did in just 2 years. The Foundation changed its name to PanKind, The Australian Pancreatic Cancer Foundation in 2020, but the vision of the founders remains at the heart of our organisation to this day.

PanKind’s main areas of focus are:

Funding research:  Thanks to the incredible efforts of so many corporate, community and other supporters, $7.6 million has been invested into pancreatic cancer research across 28 high-calibre research projects at universities and institutions, funding some of Australia’s top research talent. Their independent Scientific Advisory Panel is made up of globally recognised scientific and medical experts who are responsible for assessing our research investments.

Advocacy: PanKind launched a national awareness campaign with the Cancer of our Generation report, educating the Australian public on pancreatic cancer statistics, reaching almost 1 million Australians with key information. They are the voice of the people, working collaboratively with organisations and the government, advocating for the best possible outcomes for pancreatic cancer patients and their families.

Support for patients: PanKind works to support people impacted by pancreatic cancer by publishing useful information, creating resources and connecting people to valuable services and a community of others who share experiences of living with pancreatic cancer.

PanKind is working on…

A focus on Collaborative research:  They will be funding $600,000 in Collaborative Research Grants in 2021 which will provide funding to Australian researchers to participate in collaborative research projects. The grant encourages cross-disciplinary collaboration, between pancreatic cancer research groups and other specialities, for example, immunotherapy, nanotechnology, genomics and bioinformatics. As part of their robust process in awarding grant funding, applications will be assessed by our internationally recognised Scientific Advisory Panel.

Government advocacy
PanKind hosted a historic event at Parliament House in Canberra uniting policymakers, medical professionals, patients, and supporters to hear Federal Health Minister, the Hon. Greg Hunt MP, announce the first National Pancreatic Cancer Roadmap.  PanKind Board Director, Professor Chris Baggoley and CEO, Michelle Stewart, have joined the official Steering Group for the national project.

Patient education
Through our National Patient and Carer Hub, PanKind is connecting patients and carers to credible information, support, resources, available trials, and pancreatic cancer experts across Australia. This includes the recent launch of both a comprehensive Patient & Carer Booklet to assist people living with the disease and our EmpowerED webinar series.

National awareness

Through their national footprint, we raise awareness across Australia to help bring a sharper focus and more attention to pancreatic cancer.

PanKind is committed to seeing transformational change for people affected by pancreatic cancer. Pancreatic cancer is not a local problem, it is a global problem. No organisation will be able to achieve this change alone and they are pleased to work with like-minded organisations from across the globe. Together our activities will be amplified, and by sharing best practices, we can accelerate change.

PanKind is open to collaborating with WPCC members on initiatives that can improve survival for people affected by pancreatic cancer to scale and accelerate progress. They are committed to amplifying the WPCC advocacy message in November and feel that this internationally coordinated approach and alignment of messaging leads to a greater “cut through” each year.

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Member Profile: The Gastrointestinal Society

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The Gastrointestinal Society is a Canadian registered charity that has roots in its partner organization, the Canadian Society of Intestinal Research (CSIR), founded in 1976 in Vancouver, British Columbia. Our organizations work together providing patient information on a variety of topics from gum to bum at www.badgut.org. Gail Attara has been in the chief executive officer role since 1996.

Together, the GI Society and the CSIR are leaders in evidence-based and accessible information on gastrointestinal (GI) and liver diseases and disorders, including cancers in the digestive system (esophageal, stomach, small intestine, pancreatic, and colorectal).

All our programs and services focus on providing trusted, medically-sound information on digestive and liver health in both English and French. This includes our quarterly Inside Tract® newsletter, printed pamphlets on more than 30 topics, educational videos, and our websites in English and French. We are supporting individuals with the information they require to better understand and manage their specific health needs. We also work closely with healthcare professionals and governments at all levels toward system-wide improvements in care and treatment, this includes health technology assessment in Canada and internationally. We believe that all patients deserve affordable access to appropriate healthcare and medication, no matter where they live.

A recent issue of our Inside Tract® newsletter includes an overview of pancreatic cancer and the recent approval from Canada’s health technology assessment body for a new treatment for advanced pancreatic cancer. You can view the article on our website at https://badgut.org/information-centre/a-z-digestive-topics/treatment-of-advanced-pancreatic-cancer/.

We are excited to work with WPCC and take part in World Pancreatic Cancer Day each year. With the support of WPCC and members, we hope to make advancements in awareness, education, and research in early diagnosing tools for pancreatic cancer so that patients receive a timely diagnosis and live a better and longer quality of life.

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Member Profile: The Seena Magowitz Foundation

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Roger Magowitz started the Seena Magowitz Foundation in 2002 to honor his mother, Seena Magowitz. Since then, the Foundation has raised over twelve million dollars for pancreatic cancer research. The $12 Million primarily has funded Pilot Studies and Phase 1 Studies that have led to over $150 Million in additional funding for expanded clinical trials. Our near-term goals are seeking more rapid discovery of innovative treatments and easy methods of early detection that will extend patient quality of life.

Of course, the long-term mission is prevention and a cure. The Foundation places a strong emphasis on public awareness and the power of knowledge that intends to increase the average 5-year+ survival beyond the existing 10%. The Foundation is proud to belong to the World Pancreatic Cancer Coalition. It believes that unity and collaboration in the fight is the way to defeat this deadly disease.

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Member Profile: Purple Pansies

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Purple Pansies team during their 2020 virtual gala event that raised over $1.2 million. Their motto for the gala was, “Cancer Doesn’t Stop and Neither Do We.”

Purple Pansies was founded in 2009 following the death of Maria Fundora’s mother from pancreatic cancer. When Maria’s mother was diagnosed with Stage 4 pancreatic cancer and died three months later, Maria felt called to raise awareness and crucial research funding for this chronically underfunded but deadly disease. She chose the name Purple Pansies because she thought, “What grows in the winter and survives always? Pansies – they have the DNA to survive tough conditions.” Purple Pansies became a 501c3 organization in 2017 and are a volunteer organization.

Purple Pansies is dedicated to making a difference in the lives of individuals and families fighting pancreatic cancer through humanitarian assistance and research funding. The funds they raise are used for research, clinical trials, early detection, and to aide families in our community who have a family member suffering from pancreatic cancer and can financially use their help.

Since March, Purple Pansies has been helping other nonprofits and frontline heroes during COVID-19. They have helped deliver over 1,000 meals to hospitals, Kroger grocery stores, survivors of pancreatic cancer, and Safehouse Outreach in Atlanta. They also partnered with Operation Smile and local high school students to deliver meals to hospitals of their choice.

Purple Pansies, like most nonprofits, had to switch their annual gala from an in-person event to a virtual event, but their motto was, “Cancer Doesn’t Stop and Neither Do We.” With the help of many wonderful and generous donors, corporate partners, and a donor that was willing to match any amount up to $600,000 that they raised, Purple Pansies raised over $1.2 million and are continuing their efforts and campaign through the end of December.

Purple Pansies is gearing up for pancreatic cancer awareness month. Maria owns a restaurant in Alpharetta, GA, called Casa Nuova Italian Restaurant, and one day during the month she will donate a percentage of all sales to Purple Pansies. They also participate in a Giving Tuesday in December, and the entire staff of Casa Nuova is very involved with the organization and often volunteer their time during Purple Pansies events. In the next few months, they’re very excited to finalize a Purple Pansies scholarship for children of a parent or guardian that has been diagnosed with pancreatic cancer and needs financial help to attend school.

Purple Pansies is in the process of changing their logo so individuals and businesses know their non-profit is all about pancreatic cancer. Purple Pansies states that pancreatic cancer is the one cancer no one wants to talk about, and they feel it’s because when most people are diagnosed, it is already Stage 4 and feel hopeless. They are very supportive of the WPCC’s efforts to continue awareness education around knowing the risks and symptoms of pancreatic cancer. They’re excited to hopefully attend the WPCC conference next year and be more involved with the organization.

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