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.

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.

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.

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.

Member Profile: Asociación Cáncer de Páncreas (ACANPAN)

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For the fifth consecutive year, the Pancreatic Cancer Association (ACANPAN) and the Spanish Pancreatology Association (AESPANC) announce the Carmen Delgado / Miguel Pérez-Mateo Research Grants against pancreatic cancer.

Asociacià³n Cà¡ncer de Pà¡ncreas is the first Spanish association dedicated exclusively to Pancreatic Cancer. ACANPAN was founded in January 2015 from the experience of two patients, Carmen and Olga, who were determined to ensure that this disease diagnosis ceases to be a lifelong battle. This association promotes activities that encourage Pancreatic Cancer research and informs and supports patients and their families. ACANPAN is an open door to all patients, relatives of patients, doctors, researchers, nutritionists, psychologists, and all others related to this disease. All members of this association are volunteers who collaborate in their free time to help support this global cause.

The bulk of their funds go to research against Pancreatic Cancer through the different grants they award each year. In Spain, only 2% of official grants are allocated to researching pancreatic cancer. For this reason, ACANPAN (Pancreas Cancer Association) and AESPANC (Spanish Pancreatology Association), with the support of multiple small and large sponsors and the efforts of many volunteers, carried out the initiative of a City Race to obtain funds for the research against pancreatic cancer.

This year, they are offering two grants of 97.500€ for clinical and basic research projects. Grantees, will be selected among the 43 projects submitted by the most prestigious Spanish researchers. The award ceremony will take place on World Pancreatic Cancer Day.

Member Profile: LoveLove

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Israeli team running to defeat Pancreatic Cancer.

The Israeli Association for Pancreatic Cancer is a non-profit organization. The association was founded in August 2019, by a group of volunteers who have been exposed to pancreatic cancer, in various ways. Among them are family members of past and present patients – all mobilized to work together for a common goal. The team at LoveLove has dedicated their time and energy working for the community of pancreatic cancer patients and their families. The organization is part of the international community for the fight against pancreatic cancer, WPCC.

The goals of the association:

  • Increasing awareness of the disease and symptoms among the Israeli public.
  • Access to reliable information in Hebrew about the disease, treatment methods and innovations in the field.
  • Providing support, guidance and assistance to patients and families.
  • Raising donations for the fight against pancreatic cancer in Israel.

Member Profile: KEFI

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The KEFI team at an event to raise cancer awareness.

 

The Athens Association of Cancer Patients “KEFI” was established in spring 2004 by cancer survivors who decided to dedicate their time and spirit to support cancer patients and their families.

What’s in a name?

Kefi (κέφι) in Greek means gusto or zeal; taking after its namesake, KEFI aims at changing the common view that disease can wear out both the patients’ body and psyche. This premise is challenged daily by all our members offering moral support to anyone fighting with cancer.

The driving idea behind KEFI is to offer patient support that goes beyond simply going through the motions. KEFI has the following principles:
To face the social stigma associated with the disease and its treatment.
To develop a spirit of solidarity and mutual support in favor of the psychological and social rehabilitation of the oncological patients.
To raise awareness of cancer prevention and treatment and to ultimately communicate the message that cancer is not invincible.

Staying true to these principles, KEFI offers psychological and social support to cancer patients and their family and trains volunteers to develop skills for supporting patients and caregivers.
Every year KEFI hosts various conferences and seminars, raising awareness of medical developments on cancer treatment and cancer prevention.  The most important project of KEFI, “Support @Home”, focuses on the provision of psychosocial support by specialized psychologists and social workers to terminal and/or disabled patients in their homes. KEFI also offers gymnastics classes for cancer patients to help them cope with their harsh therapies and weakened body, as well as other activities. KEFI is a member of multiple umbrella-organizations, namely CML Advocates Network, DiCE, ECPC, ENGAGe, EULAP, LuCE, WPCC, and collaborates with the German organization Outdoor Against Cancer (OaC). KEFI, is keen on raising awareness of pancreatic cancer, and has launched a special application (Pancare for both Android and IOS) and website www.pancare.gr for Greek patients. We will be delighted to join forces with the WPCC, which is an excellent global forum to trade ideas and provide and share support in the form of know-how, visibility and best practices. Our goal is to achieve an even greater reach to cancer patients and a more meaningful impact through a tightly knit collaboration with the WPCC.

Member Profile: Oltre la Ricerca

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The Oltre la Ricerca Team

Oltre la ricerca is a non profit organization founded in Rimini (northern Italy) in 2012 by Francesca Gabellini, after the loss of her husband Luca, affected by pancreatic cancer. Luca was 42 years old when he passed away, leaving a 6 month old son. Francesca experienced many issues during Lusa’s illness and she is now determined to turn on the light for pancreatic cancer patients.

We are a charity that creates a bridge between pancreatic cancer patients and institutions, hospitals, general practitioners, dietitians, psychologists and surgeons. It has been shown in other cancers that increasing awareness of the disease can have a very strong impact on the ability to manage the illness.

Oltre la ricerca is proud of our volunteers that actively share good practice, proper life style (such as healthy diet and fiscal activity), early detection strategies and cooperation between hospitals and territory in order to support pancreatic cancer’s family. Our fundraising is based on show cooking and local markets

Oltre la ricerca’s main objectives are to:

  • Provide nutritional support and recipes Encourage an open dialogue between general practitioners, surgeons, oncologists and patients
  • Provide grants for case manager nurses and/or dietitians

Oltre la ricerca proudly belongs to World Pancreatic Cancer Coalition because sharing information under international cooperation is the right way to win the battle. The more in contact we are, the faster we can obtain significant results for patients. This is our hope and our desire, we need to open our minds and trust each other.

Member Profile: Northern Ireland Pancreatic Cancer (NIPanC )

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August 2018 NIPanC launch at The Mater Hospital Belfast attended by Jamie Dornan Patron, James Dornan President & Jess Dornan Lynas

 

NIPanC was launched in 2018 by our patron, Jamie Dornan, who had himself lost his mother, Lorna, to the disease.

The strength of NIPanC lies in it bringing together individuals who have suffered from pancreatic cancer, families with direct experience of its impact and medical professionals dealing with this condition.

NIPanC has three objectives: increasing public and professional awareness of Pancreatic Cancer; funding research; and supporting patients with Pancreatic Cancer and their families — to ensure that they never walk alone.

Our initial focus has been on increasing awareness. In Northern Ireland more than 250 people a year die of pancreatic cancer (in a 1.8 million population) yet public knowledge of the disease is extremely low.

As a young organisation NIPanC has much to learn. The great value of the WPCC is its diverse membership and everyone’s willingness to share information, advice and their experiences. Working in partnership we can do so much more than we can working apart!

Our agenda for the next year will undoubtedly be skewed by the coronavirus pandemic. What really excites me about the future is the prospect of engaging with colleagues in the WPCC to draw out new ideas on how we can better fight pancreatic cancer and support those individuals and families affected by it.

Our enduring message must be one of hope. A hope firmly underpinned by an increasingly professional approach to funding research, increasing awareness and practical and empathetic support for affected by pancreatic cancer.

Member Profile: ELLOK

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The Board of ELLOK and representatives of its member organizations met with the President of the Hellenic Republic Prokopios Pavlopoulos.

 

Hellenic Cancer Federation — ELLOK is an “umbrella” organization established in 2016 aiming to unite patients, their caregivers, healthcare professionals, cancer hospitals, politicians, the media and the public, towards the improvement of cancer care, cancer prevention, cancer survivorship, rehabilitation and reintegration of cancer patients into social life and work.

Today, ELLOK represents 38 cancer patient organisations covering all cancers, common and rare, from all over Greece. It is the powerful & documented voice of cancer patients and survivors. The vision of ELLOK is for integrated, timely and affordable cancer and health care for all cancer patients, striving for excellent diagnosis, treatment, psycho-social support, rehabilitation and reintegration. ELLOK’s mission is to join forces with all cancer patients, volunteers and friends to advocate for the individual and collective rights of cancer patients, their caregivers and their family, for the improvement of cancer and health care and for increased funding for cancer research.

According to Globocan 2018, the estimated number of new pancreatic cancer cases in Greece was 2175 and 2031 of them will not survive. Since 2014, ELLOK, member of the ΕCPC-European Cancer Patient Coalition, actively participates in Pancreatic Cancer Europe, the European Multi-Stakeholder Platform on Pancreatic Cancer and the World Pancreatic Cancer Coalition. There is no dedicated pancreatic patient support group in Greece and ELLOK aims to raise pancreatic cancer awareness of the general public, the general practitioners for the early referral of patients and of the politicians for supporting early detection and research. ELLOK translated informative material/infographics in Greek and supports its members in relevant campaigns throughout the country.