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.

Member Profile: EuropaColon Slovakia

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EuropaColon Slovakia was founded in May 2007 as a nonprofit organization for patients with colorectal carcinoma and their families. Epidemiological data for cancer and years of experiences with patients motivated the organization to expand its target, and in 2014, EuropaColon Slovakia joined the European Pancreatic Cancer Multi-Stakeholders Platform. At that time, the organization also established a new alliance, “Say No To Pancreatic Cancer” in Slovakia. The mission is to spread awareness and evidence-based facts about pancreatic cancer prevention, as well as the benefits of early detection. The organization lobbies for availability of diagnosis and new treatments for patients with pancreatic cancer.

For those affected by cancer, the organization provides a helpline and special personal psychosocial support in patient support centers in two major oncological institutes in Slovakia. Its volunteers, former patients, are professionally prepared to support newly diagnosed patients in those centers two times per week and mostly discuss psychological problems, social issues, treatment, side effects and nutrition after diagnosis.

The organization connects all stakeholders — patients, healthcare providers, medical and pharmaceutical companies and politicians to lobby for patients´ rights and importance of prevention and early detection.

A EuropaColon Slovakia patient support center in action

Member Profile: The Swiss Pancreas Foundation

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The Swiss Pancreas Foundation (SPF), headquartered in Bern, Switzerland, is an independent non-profit providing help for those suffering from pancreatic diseases. Founded in 2007, SPF has the following goals:

  • To advise and inform the Swiss population on the growing problem of pancreatic disorders and pancreatic cancer. To provide the many people affected, along with their treating doctors, with missing information on specialists, along with centers specializing in pancreatic treatment.
  • To support research projects into pancreatic illnesses.
  • To increase knowledge about pancreatic ailments by organizing medical events and congresses.

To fulfill these goals, the SPF regularly organizes events open to the public, grants scholarships for young health professionals and provides financial support to different research projects.

Most importantly, and at the heart of the SPF, is the World Pancreas Forum. This international scientific meeting, in its third year, will take place in Bern Feb. 5-7, 2020. New research pertaining to the treatment of pancreatic neoplasia is presented. In the future, the World Pancreas Forum is scheduled to take place as an annual meeting alternating between China, the United States and Switzerland.

Member Profile: Inspire2Live

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Inspire2Live (I2L), located in the Netherlands, is an international movement founded in 2011 by the people who also started charity events like Alpe d’HuZes, currently Holland’s biggest charity action. All these charities are targeted toward one single goal: getting cancer under control. To achieve this, the organization also strives to change and improve the way global cancer research is organized and executed. I2L is a platform consisting of approximately 30 patient advocates, bringing together patients, doctors, scientists, the industry and government to work on the challenges to get cancer under control. I2L works for all cancers, but since pancreatic cancer is still one of the deadliest cancers, it is of special interest. One of I2L’s goals is speeding up the process for new therapies in pancreatic cancer. Of particular focus is whole genome sequencing for all pancreatic cancer patients to see whether their tumor cells have actionable mutations for which precision medicine is available and the right choice of targeted treatment. With its membership in the World Pancreatic Cancer Coalition, I2L hopes to expand its network and find new collaborations for common goals.

Member Profile: #PurpleOurWorld

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Some of the #PurpleOurWorld family with Ambassador Tracey Spicer and Sydney newsreader Peter Overton in front of the Opera House, which turned purple for World Pancreatic Cancer Day!

 

#PurpleOurWorld was founded in October 2014, just weeks before the first World Pancreatic Cancer Day (WPCD). It was founded in honor of wife, mother and sister Rochelle Goulburn, who passed away from pancreatic cancer in August 2014 after 16 months of treatment. When Goulburn was diagnosed, her family found there was little awareness of the disease, so they set about to change that, working alongside their charity partners in Australia — the Avner Pancreatic Cancer Foundation, Garvan Research Foundation, GI Cancer Institute and Pancare Foundation, as well as several Ambassadors — media personality Tracey Spicer and National Rugby League player Robbie Farah.

The organization’s founders realized early on that most people absorb their information via social media, so that’s where they focus their energy — raising awareness with followers on Facebook, Instagram and Twitter. They work with corporate organizations to further the #PurpleOurWorld message on their internal communication systems and some of them, such as Westfield, Ramsay Health Care and Gelato Messina, have taken their message mainstream as well, by publicly supporting the organization in Australia.

Some of the #PurpleOurWorld family on World Pancreatic Cancer Day 2018.

#PurpleOurWorld believes in collaboration and that speaking with one coordinated voice is the only way to get the message across. Through WPCC membership, #PurpleOurWorld appreciates the collaboration that happens between the member organizations and idea-sharing that further strengthens the collective message.

With the sun rising there first, Australia once again looks forward to kicking off the global WPCD campaign with a bang!

Member Profile: WINGS OF HOPE FOR PANCREATIC CANCER RESEARCH

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From left: Cathy Noon, pancreatic cancer survivor; Dr. Marco Del Chiaro, Division Chief, Surgical Oncology Clinical Director, Hepato-Pancreatic-Biliary Program, University of Colorado; Maureen Shul, WINGS OF HOPE founder; and Dr. Richard Schulick, Director, University of Colorado Cancer Center.

Maureen Shul founded WINGS OF HOPE FOR PANCREATIC CANCER RESEARCH in 2012 in Colorado (U.S.) after losing her brother and mother to pancreatic cancer within months of each other. Driven by grief and motivated by how woefully behind pancreatic cancer is in terms of research funding, early diagnostic methods and effective treatments, Shul’s goal was to form an all-volunteer organization dedicated to raising funding for pancreatic cancer research.

In 2013, WINGS OF HOPE entered into a formal partnership with the University of Colorado Cancer Center, whereby a collaborative effort was established to raise awareness and funding for pancreatic cancer research taking place at this medical center. Through annual golf tournaments and fundraising benefits, WINGS OF HOPE awards research grants annually to physicians and researchers working specifically on pancreatic cancer-related projects. This seed funding is instrumental in allowing those smaller, innovative projects to rapidly translate to the clinic and move forward in receiving much larger grants on a national scale.

In 2019, grants were awarded to projects looking into radiation therapy and the mechanisms that cause it to sometimes contribute to the aggressive increase of fibrosis, leading to resistance to chemotherapy and radiation.

WINGS OF HOPE looks to the World Pancreatic Cancer Coalition for the latest information on research developments through its network of nonprofit organizations and its annual conference.  It is through this positive and collaborative network that WINGS OF HOPE shares in the ongoing research data with doctors, researchers and other nonprofit organizations.

Member Profile: Pancreatic Cancer Awareness Gibraltar Charitable Trust

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American singer/songwriter Erin Willett with Pancreatic Cancer Awareness Gibraltar Founder Louis Baldachino. Willett traveled to Gibraltar in November 2018 to perform her popular song, “Hope’s Alive,” during the organization’s “Purple Light” event.

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

The organization set out to create an ongoing and ambitious program of events and projects, called “Purple Impact.” Its goal for these events and projects is to be effective in raising awareness and dialogue with doctors and patients — therefore, it always involves Gibraltar Health Authority’s (GHA’s) medical professionals; cancer sufferers; management, nurses and volunteers of Cancer Relief Centre Gibraltar (CRC); and members of other local cancer charities.

Founder Louis Baldachino, a pancreatic cancer survivor, said he was proud of garnering the involvement of each of these groups in the organization’s events.

Upcoming events for the remainder of the year include:

  • As a follow-up to last year’s visit to Gibraltar by Pancreatic Cancer Action UK’s CEO Ali Stunt, the GHA has agreed for her return to discuss progress in the introduction of GHA’s new pathways.
  • As part of Pancreatic Cancer Awareness Month in November and World Pancreatic Cancer Day Nov. 21, 2019, a special “Purple Light” event will light purple an iconic castle fortress in Gibraltar. Speakers will also be present for this year’s event.

Baldachino said, “We are looking forward to working with the World Pancreatic Cancer Coalition throughout this year and importantly, making World Pancreatic Cancer Day 2019 the most successful one yet in creating an impact in our community.”

Member Profile: Elvin Howard, Sr. Pancreatic Cancer Advocacy Foundation

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Front, left to right: Dr. Yolonda Spooner and Bertha Howard. Back, left to right: Sgt. Elvin Howard, Jr., Dr. Peter Bostick, Wendell Mack, Veronica Howard Sizer, Dr. Monteic A. Sizer, and Edward Ball, Jr

Elvin Howard, Sr. Pancreatic Cancer Advocacy Foundation (PCAF) was founded in the fall of 2016 after several meetings by founding members Bertha Howard, Sgt. Elvin Howard, Jr., Monteic A. Sizer, PhD, and attorney Veronica Howard Sizer. It was formed to honor the memory of Elvin Howard, Sr., a devoted husband, father, grandfather, family man and Christian. Howard was misdiagnosed and treated for diabetes several months prior to being diagnosed with pancreatic cancer.

Elvin Howard, Sr. PCAF was formed to reduce pancreatic cancer deaths and family hardships by raising awareness of pancreatic cancer through supporting research, pancreatic cancer survivors, their caregivers and families of color.

The organization supported legislation in Louisiana that will now make it possible for people battling metastatic cancer to gain access to the best and newest treatment options available. Additionally, the organization has partnered with Let’s Win! to help get leading-edge research and clinical trial information to African Americans and communities of color. A mutual messaging campaign in Louisiana and across the country is also planned in the coming months.

For Elvin Howard, Sr. PCAF, World Pancreatic Cancer Coalition (WPCC) members are serving as key allies for the organization as it seeks to bring greater awareness and treatment options to African Americans and communities of color throughout the United States.

This is critically important due to the disproportionate rate of pancreatic cancer found in the African American community. Dr. Monteic A. Sizer, the organization’s national representative, leads its work with Let’s Win! and recently provided insight and valuable information to WPCC in regard to its upcoming messaging and public awareness campaign. He is also leading discussions about how the organization might partner with the GENERATE Study, funded by StandUp2Cancer and the Lustgarten Foundation. The organization is also discussing with the Pancreatic Cancer Action Network ways to reach the African American community.

Of these collaborations, Sizer said, “We are better and more effective together.”