Member Profile: Kelly’s Heroes

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Kelly’s Heroes, founded in 2016, gives pancreatic cancer patients hope to live with pancreatic cancer. Their work is inspired by Steve Kelly, an editor at the Philadelphia Inquirer, much-loved family man and friend to many. After he was diagnosed with stage 4 pancreatic cancer at age 53, Steve participated in two clinical trials, advancing what we know about this terrible disease and creating opportunities for pancreatic cancer patients today and tomorrow. That legacy lives on in the Steve Kelly Fund for Pancreatic Cancer Research at Johns Hopkins.

Steve Kelly lived with pancreatic cancer for 22 months after his diagnosis. In those 22 months, he white-water rafted and ziplined in Costa Rica; ran a 5K with his daughter; and donned his kilt and poured the Guinness at his annual St. Patrick’s Day bash. Even with stage 4 cancer, he lived with a capital L.

Writing for the Inquirer, Steve said, “Sooner rather than later, these dedicated medical professionals will develop cures for cancer. I would love to be here when it happens.”

To learn more about Steve’s story check out the links below:

Ongoing Projects

Kelly’s Heroes’ efforts support two priorities: clinical trials that give patients greater treatment options and research into an early detection test. Their fund-raising primarily supports the work of three Hopkins’ physicians – Drs. Dung Le and Lei Zheng who were part of Steve’s care team, and researcher Dr. Bert Vogelstein. They’re world-renowned researchers as well as caring, compassionate physicians who keep Kelly’s Heroes updated on their work.

 Kelly’s Heroes considers their work as taking care of Steve’s unfinished business.

They are grateful to be a member of the World Pancreatic Cancer Coalition and for the support and inspiration shared among its members.

To learn more about Kelly’s Heroes, visit their Member Page

               

 

 

Member Profile: My Everest ODV

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Luigino Sala, with a beloved landscape of mountains, the founder of My Everest.
My Everest ODV, standing for “Organizzazione di Volontariato” (Voluntary Organization), is a non-profit association based in Rivolta D’Adda, Italy. Established in 2015 from the idea of Luigino Sala, who was sadly dying of pancreatic cancer, with a vision to empower individuals and communities into believing in scientific research, the organization draws inspiration from the Everest mountain, symbolizing the challenges that people with cancer face and the heights they can reach with the right support. Their payoff is what Luigino always said: “I hope, I dream, I live” in order to encourage supporting scientific research.

 

The association wants to be the reference for pancreatic cancer patients and has two main goals:
  • Provide information on the disease with particular attention to clinical trials, new therapies and prevention
  • Support scientific research projects through fundraising.

Ongoing Projects

Thanks to the support received so far, the Association has been able to finance the presence of a data manager involved in the analysis of specific clinical studies on pancreatic cancer at the Pancreas Center of the IRCCS Ospedale San Raffaele in Milan, and supported an important research project on personalized medicine, PACT-21. They are very proud to be members of the WPCC.

Every year is a great pleasure to join the WPCC’s campaign and post information through their social media channels according to WPCC guidelines. Our goal is the same as the WPCC: spreading information to the population to teach how to recognize pancreatic cancer in a very early stage and increase the opportunities to treat it.

To learn more about the My Everest ODV, visit their Member Page

 

                  Dr. Michele Reni and Dr. Silvia Romi, the datamanager financed by us, showing My Everest payoff as testimonials.               Mrs Monica Rozzoni - My Everest President and Luigino Sala wife - together with Dr. Michele Reni anche Prof. Massimo Falconi from Pancreas Center from IRCCS Ospedale San Raffaele, Milan, Italy

 

 

Member Profile: Cancer Society PALEMA

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Cancer Society PALEMA was founded in 2015. People from the cancer profession took the initiative to start PALEMA as there was no association for these diagnoses to which they could refer their patients.

They have two areas of focus:

First – they support those already affected with a cancer diagnosis or their relatives/caregivers. They provide information, advice and news on their website https://palema.org/, they arrange support meetings for patients as well as caregivers mostly in digital format. They arrange several events every year covering all diagnoses – these can be physical events, webinars, or hybrid events. WPCD is their main event regarding pancreatic cancer – as is the month of November. They also have a support phone line for those who need someone to talk to and they have a closed Facebook groups where people can meet and discuss, give advice and hope.

Second – they are working hard in the field of advocacy to make changes in the healthcare system. They want to see a system where the patient is in in the drivers seat working together with other stakeholders. They want to have more influence in all fields such as research, healthcare. They want together, with politicians and other decision-makers bodies, to change the patients trajectory to a more seamless pathway from symptom via diagnosis and treatment to rehabilitation and in the best case scenario, a cure. If not a cure then the possibility to live a “normal” life with cancer as a chronic disease.

 

Ongoing Projects

PALEMA includes five different cancer diagnoses. Besides pancreatic cancer, which is their largest group, they represent cancers in liver, bile duct, stomach and esophageal (upper GI). These five diagnoses belong to what the EU calls “poor diagnosis cancers” with a combined 5-year survival rate below 30%. Pancreatic cancer, which is also called “a neglected diagnosis”(neglected with regards to survival, new treatments, research, and studies), is worst in class with a survival rate below 8%.

Their cancer diagnoses are extremely time critical. For those affected, time is of the essence and often the difference between life and death. Therefore, they refer to them as Emergency Cancer (Blåljuscancer® in Swedish), which means that they want their diagnoses to be treated as acute diseases that require immediate attention and treatment. What most of their surviving members have in common is that they have received care very quickly after a suspected diagnosis. You can read more about emergency cancers here: https://palema.org/en/types-of-cancer/emergency-cancer/.

They are also trying to influence decision-makers to ensure that their diagnoses receive more resources for research.

They have a website https://palema.org/ with a great amount of information for those affected. Besides the diagnosis information pages, they publish articles about the newest research, new studies, and other interesting information. They have a lot of recorded events and webinars in their archives, and they share patient stories (survivors to give some hope) and they have information about what you can do for yourself. Most information is in Swedish, but translation to English is in progress.

The WPCC can support PALEMA by sharing information about what happens internationally, the latest developments within the fields of precision medicine, and research and new studies about immunotherapy. Also sharing stories about hope, support with information and campaign material, and help with spreading the word to reach Swedish-speaking people living abroad.

They are looking forward to working with the WPCC in continued good cooperation to jointly support those affected and to fight for a cure for pancreatic cancer on an international arena.

To learn more about the Cancer Services PALEMA, visit their Member Page

 

                               

 

 

Member Profile: #PurpleOurWorld

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#PurpleOurWorld was founded in October 2014, after the death of wife, mom and sister Rochelle Goulburn. To coincide with the inaugural World Pancreatic Cancer Day, they asked everyone we knew to wear purple and share a picture on social media using the hashtag #PurpleOurWorld and also tweeted to a number of well-known Australian media personalities. Through their retweets they managed to amplify #PurpleOurWorlds message even further. We made it our mission to make as much noise as possible.

Their main areas of focus are to raise awareness, rather than money, as there were already well-known pancreatic cancer charities in Australia and when they started. They did not want to dilute the fund pool. Since they formed their charity partnerships, they have also formed The Australian Pancreatic Cancer Alliance. The Alliance meets quarterly to share ideas and projects, as well as collaborate on several initiatives and lobby the government for further funding and awareness. They dedicate their time to purely raising awareness, both on social media and with corporate organizations. Some campaigns have been big, for example, WPCD messaging in Westfield shopping centers in Australia, USA and UK, and some have been smaller, such as corporate organizations changing their signatures to purple for the month of November. On social media, they share facts, information about the pancreas, stories, and official WPCD communications and assets.

Ongoing Projects

Since #PurpleOurWorld is an awareness-raising initiative, they appreciate all the assets that the WPCC provides them, as well as the information sessions that have been available throughout the year. At the end of the day, they are about sharing information to educate the community, so as long as WPCC keeps providing resources, they will keep sharing them.

In the upcoming year,  #PurpleOurWorld is looking forward to working with the WPCC to motivate the global community to band together and help in raising awareness and funds for pancreatic cancer. They look forward to collaborating on an even deeper level with their fellow WPCC members in the coming year.

To learn more about the #PurpleOurWorld, visit their Member Page

 

 

 

 

Member Profile: NIPANC

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Northern Ireland Pancreatic Cancer (NIPANC) was set up in August 2018 and has its roots in a group of people affected by pancreatic cancer coming together for support and to raise funds to promote better diagnosis and treatment for future patients.  The charity’s work brings together families who have suffered losses from pancreatic cancer, families who are currently facing a diagnosis and survivors of the disease. NIPANC concentrates its research funding in Northern Ireland, working collaboratively with other charities to fund vital research and promote early diagnosis of the disease. NIPANC gives a stronger voice to families affected by pancreatic cancer in Northern Ireland. NIPANC is working to improve the outcomes of pancreatic cancer by:

  • Increasing public understanding of this cancer
  • Promoting awareness of the cancer’s signs and symptoms by both medical professionals and members of the public
  • Funding vital research
  • Supporting patients and their families

Ongoing Projects

In November 2022, NIPANC launched the first digital game to promote public awareness of pancreatic cancer; a joint event with researchers from Queen’s University Belfast and Focus Games Ltd. The free-to-use digital game aimed at informing as many people as possible about the disease in a more accessible way.

The game can be accessed here: https://www.whatispancreaticcancer.co.uk

NIPANC is currently developing another serious game for medical staff including nursing, doctors and pharmacy.

During the next year, they are working with the WPCC to raise awareness of pancreatic cancer in their part of the world as a recent survey conducted by NIPANC revealed an 86% increase in people being diagnosed with the disease. The audit published on Tuesday 9 May, was funded by local pancreatic cancer charity NIPANC with the audit work undertaken by the Northern Ireland Cancer Registry (NICR) at Queen’s University Belfast in partnership with HPB clinical staff in the Belfast Trust:

https://www.qub.ac.uk/News/Allnews/featured/NewNIauditintopancreaticcancerrevealscontinuedincreaseincases.html

To learn more about the NIPANC, visit their Member Page

 

 

 

 

Member Profile: The Elizabeth Coteman Fund

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The Elizabeth Coteman Fund was established in 2010 upon the death of beloved wife and mother Elizabeth Coteman from pancreatic cancer, to support those with a diagnosis of pancreatic cancer and their families. The charity also provides a legacy for a wonderful woman. Their main areas of focus include supporting the best possible quality of life for those affected by a diagnosis of pancreatic cancer, both individuals and families. It does this by providing, friendship, advocacy, emotional support, problem solving, financial grants, and bereavement support. The Fund also works in partnership with the research community, at two key UK locations, to support work into earlier diagnosis, better treatment options, enhanced pain management, and a better understanding of post-surgical gastroenterological issues. They are looking forward to working on common goals with the WPCC and continuing to be a WPCC member.

21/06/13 Gerald Coteman and his son Mark Coteman , who are both doing a triathlon for charity . Picture by David Johnson .

Ongoing Projects

Their current 3-year plan includes one central theme; namely to raise the profile of, and improve support for, the psychological and emotional impact of pancreatic cancer. Their aim is to encourage the adoption of early implemented holistic assessments throughout the NHS in the UK, with a strong emphasis on psycho-social support pathways – for patients and families.

You can support the Elizabeth Coteman Fund by continuing to maintain high profile campaigns world-wide for earlier diagnosis, better treatment options, and psychological and emotional support.

To learn more about the Elizabeth Coteman Fund, visit their Member Page

Member Profile: Pancreatic Cancer Ireland

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Pancreatic Cancer Ireland was founded in September 2022 by Rachel Duquesnois shortly after losing her wonderful mother, Martina Dunne, to pancreatic cancer. Unfortunately this was not the first time the family was impacted, with two other relatives previously passing away due to pancreatic cancer. Having experienced the devastating impact of this disease as well as learning about how little progress in survival rates has been made in the past decades, Rachel was motivated to be an active participant in making change happen.

They have four main goals:

  1. Peer Support
  2. Raising Awareness
  3. Advocacy
  4. Fundraising

In their first year they have been busy in establishing a supportive space for pancreatic cancer patients to connect, developing their social media platforms and meeting with relevant professionals to gain better insight to how they can collaborate in advocating for change in Ireland.

Ongoing Projects

Currently, they are looking forward to collaborating with the WPCC with World Pancreatic Cancer Day arriving in two months. They are also working on the final details of their very first awareness and fundraising campaign. Keeping up to date on developments that are happening internationally is a key tool in advocating for increased funding for service provision and research. They will be attending the upcoming AACR Special Conference on Pancreatic Cancer.

With their first year of learning and developing almost behind them, they are extremely excited about pushing forward towards reaching their goals and taking on an active role in improving outcomes for pancreatic cancer patients and their families.

To learn more about National Pancreatic cancer Foundation, visit their Member Page

 

 

 

 

 

 

Member Profile: National Pancreatic Cancer Foundation

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In 2009, Rhonda Williams established the National Pancreatic Cancer Foundation following the tragic loss of a family member to pancreatic cancer. This unfortunate event highlighted the insufficient awareness and funding dedicated to pancreatic cancer. Recognizing the pressing need for enhanced support and research for this form of cancer, the foundation aimed to ensure better care and resources for future patients facing pancreatic cancer diagnoses.

They have four main goals:

1. Direct Financial Assistance: They offer up to three months of financial aid to assist families with rent and utilities during their challenging journey with pancreatic cancer.

2. Research for Early Detection and Alternative Modalities: They prioritize funding research initiatives aimed at early detection methods and exploring alternative and integrative approaches to pancreatic cancer treatment.

3. Educational Awareness: Raising awareness about pancreatic cancer is a crucial aspect of their mission. We strive to educate the public about the disease, its risk factors, and the importance of early detection.

4. Patient Advocacy: Their organization actively advocates for the rights and well-being of pancreatic cancer patients, working towards better access to quality care and support services.

Ongoing Projects

Currently, they are working on educating both patients and physicians on the utilization of not only conventional treatments but also alternative options that address the holistic well-being of the mind, body, and soul in the management of pancreatic cancer.

Their primary goal this next year is to raise awareness among those who may be unfamiliar with pancreatic cancer until a diagnosis affects them or their loved ones. They aim to educate not only patients but also physicians about the potential benefits of exploring alternative treatments to extend survival rates. Empowering medical professionals to conduct research on alternative therapies is a crucial aspect of their mission.

To learn more about National Pancreatic cancer Foundation, visit their Member Page

 

 

 

 

 

 

Member Profile: Europacolon Portugal

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About Europacolon Portugal

Europacolon Portugal, Association for the Support of Patients with Digestive Cancer, is a Private Institution of Social Solidarity, founded in 2006, in Porto, Portugal. They have a total of 1,500 Associates across the country. Their primary function is to contribute to the reduction of the number of deaths from Digestive Cancers, to promote and create awareness for prevention, to remind of the importance of early diagnosis, and to support patients and families, improving their quality of life.

They have three main goals:

  • Stimulate preventative attitudes
  • Improve the quality of life of patients, survivors, family members, and caregivers of people with digestive cancer
  • Help in decreasing the numbers of digestive cancer

Europacolon Portugal wants patients to have access to a rapid diagnosis (complementary diagnoses), to the best of treatment — Precision Medicine, Equity of Access, stabilization of the disease, greater survival with quality of life, and — very importantly — participation in therapeutic decisions.

They offer several types of patient support, such as:

  • Psychology Consultations
  • Nutrition Consultations
  • Social Support
  • 2nd Medical Opinion
  • Legal Support
  • “RAS” Test Logistics
  • Volunteering
  • Awareness Actions and Primary Prevention
  • Complementary Therapies (Reiki, Yoga, Clinical Hypnosis, Acupuncture)
  • Helpline: 808 200 199

In addition to their patient support services, Europacolon Portugal has developed additional Prevention and Support projects including their School Food Education Project, support groups, home support for patients, and informal caregiver support programs.

Vitor Neves, President of Europacolon Portugal

Current Projects

Currently, Europacolon Portugal is developing a pilot project called “+ Intestine” that is an important health initiative, bringing bowel cancer to the Black community through a Mobile Health Unit. Colorectal cancer is the third cause of cancer worldwide. In Portugal alone, more than 10,000 people are diagnoses every year, resulting in 4,000 deaths. If detected early, bowel cancer can be stabilized in more than 90% of cases. Similarly to pancreatic cancer, colorectal cancer needs increased awareness and advocacy.

According to the American Cancer Society, African Americans are about 20 percent more likely to develop colorectal cancer and about 40 percent more likely to die from it than most other groups. While there is no relevant data on this in Europe, this project will be a great starting point.

 

Continuing Goals

Pancreatic cancer is often a silent disease. It mostly affects people over the age of 55, with an average diagnosis of 72 years. Eighty percent of people diagnosed with end-stage pancreatic cancer only live four to six months.

In Portugal, it is estimated that there are 1,619 new cases per year. Europacolon Portugal believes that we need more and more disease awareness campaigns that reach the population and help them understand this disease, risk factors, prevention, and treatments. It is mandatory that the population knows more about the pancreatic cancer systems and means of diagnosis. It is also fundamental to create patient support programs for patients and their families/caregivers. Support for pancreatic cancer patients improves quality of life and well-being!

In addition to helping spread awareness about pancreatic cancer with the WPCC, Europacolon Portugal continues to work on several different goals:

  • Encouraging greater participation of family physicians
  • Encouraging doctors to value the symptomatology of pancreatic cancer
  • Improving rapid diagnosis, with the possibility of surgery, to ensure stabilization of the disease
  • Improving access to the best therapies
  • Providing equal access across the country
  • Monitoring of pancreatic neuroendocrine tumors
  • Achieving quick decisions and treatment of neuroendocrine tumors with innovative technologies (Nuclear Medicine)

To learn more about Europacolon Portugal, visit their member page.

 

 

 

 

 

Member Profile: Pancreatic Cancer Awareness Gibraltar Charitable Trust

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Pancreatic Cancer Awareness Gibraltar Charitable Trust was founded in February 2018 with a total focus on raising awareness about pancreatic cancer to the public, general practitioners, and other medical professionals in Gibraltar, as well as, supporting survivors and those fighting the disease.

The organization set out to create an ongoing campaign and projects in raising awareness. In all their campaigns, events, and projects, they always directly involve members of management of the Gibraltar Health Authority (GHA), medical professionals, survivors and their families, and members of other local cancer charities.

Photo taken at “Pamplona to Gibraltar Charity Cycle Challenge” on 20th May 2023. This event welcomed 6 local cyclists who completed at 9 day, 1,200 kilometers (750 miles) ride to fundraise and raise awareness about pancreatic cancer. (Pictured left to right: Transport Minister, Paul Balban; Mayor, Cristian Santos; Founder, Pancreatic Cancer Awareness Gibraltar, Louis Baldachino; Culture Minister, John Cortes; Cyclist, James Alcantara.)

The founder of the charity, Louis Baldachino, an 8-year pancreatic cancer survivor, says he is immensely proud of the vital impact the charity has made to the local community and to GHA’s medical professionals. Louis founded the charity shortly after he was diagnosed with pancreatic cancer while he was still under treatment:

“I was diagnosed with Stage 4 pancreatic cancer in July 2015 and I know how lucky I am to still be here and fighting. I wanted and needed to inspire others and one way of doing this was to create a charity. I felt that the only right thing to do was to try and promote awareness to the general public, GPs and medical institutes in Gibraltar, especially as there were and are no other pancreatic cancer charities in Gibraltar.”

Upcoming events for the remainder of the year include:

  • Ongoing scheduled discussions with the GHA management team throughout the remaining of 2023, focusing on early diagnosis of pancreatic cancer.
  • As part of their campaign and many other events held during Pancreatic Cancer Awareness Month in November, the week leading up to WPCD will see a special “Purple Light” event, featuring the iconic castle fortress in the upper Rock of Gibraltar, lit up in purple. The event will be attended by GHA’s management, survivors and their families, and representatives from other charities.
  • On WPCD, they will promote a “Purple Day,” encouraging people across the community to wear purple, including shops, large corporate firms, pharmacies, schools, and restaurants.

The Charity is looking forward to working with the WPCC this year and making WPCD 2023 another successful awareness campaign. The Charity says that being a member of the WPCC is important, and it makes them proud to be working together with all the other organizations around the world. It immensely motivates them to continue their campaign in raising awareness about this horrible disease.

To learn more about Pancreatic Cancer Awareness Gibraltar Charitable Trust, visit their member page.Â