OUR IMPACT 2021

 

TOGETHER, WE PERSEVERED.

Like many Canadian organizations, we entered 2021 with lessons and insights from 2020: we were more resourceful, found strength in the nimble nature of our organization, and looked for ways to increase support and engagement among patients and caregivers. The most vulnerable people in our community spent more time isolated from their loved ones, but we ensured they were never truly alone — we were there to answer questions, provide support and reassurance, and create a virtual community stronger than ever before.

When we reflect on 2021 — a year that was once again characterized by uncertainty in an ever-shifting global landscape — one word keeps coming to mind: perseverance.

Perseverance is what we saw from patients who advocated for their diagnosis and often had to go through treatments alone because of Covid-19 safety measures. It is what we heard in the voices of caregivers, who managed appointments, researched treatment options, and advocated for better patient care, while carrying unimaginable stress and worry compounded by the pandemic. Our community fundraisers persevered, many of whom have lost loved ones to this disease, motivated to find new and accessible ways to support desperately needed research.

In 2021 we were inspired, as we always are, by the innumerable members of our community who never lost focus of our collective goal: to raise the rate of survival and improve quality of life for pancreatic cancer patients.

And so, with the expertise of our staff, the support of our board of directors, the brilliance of world-renowned researchers, and the many generous volunteers and donors who stand with us year over year, we persevered.

We persevered because we have been called to fight the world’s toughest cancer.

We persevered, because that’s what thousands of pancreatic cancer patients across Canada do every day.

We persevered because of you.

Together, this is our impact.

 

 

 

OUR FUNDING PRIORITIES

When the pandemic hit in 2020, many research studies were paused to meet the needs of those impacted by Covid-19 and keep Canadians safe. We pivoted to make support services our highest funding priority, meeting the critical mental health needs of patients and caregivers. Over the course of 2021, the tide started to turn. Researchers were determined to resume their work advancing treatment options for pancreatic cancer patients and we were ready and excited to once again make significant investments in clinical trials. Because of the hard work and generosity of fundraisers, sponsors, donors, staff, and our board of directors, we were able to increase commitments to all areas of our mission. Our community rallied around each other, united in the knowledge that, when you are battling a disease that has seen little progress in 40 years, there is absolutely no time to lose.

Research – As researchers found safe ways to return to the lab and treat patients amidst the pandemic, we were able to resume our planned research investments, which once again became our most urgent funding priority. In fact, we were thrilled to launch an international clinical trial in collaboration with eight of the most esteemed cancer research centres in North America despite the interruptions the pandemic was still causing. 

Programs and Services – Since the beginning of the pandemic we’ve seen the demand for virtual support services double year over year. As patients, caregivers, and those bereaved by pancreatic cancer needed information and support, our free Ask An Expert and Peer Support programs were there to answer the call with increased capacity and reach.

Awareness & Outreach – Our digital lives deepened throughout the pandemic and in 2021 we reinvested in critical campaigns and strengthened bonds with allied organizations, while finding new ways to spread awareness. Through the launch of our podcast and a survey designed to learn more about the gaps for patients and caregivers at end of life, we shared important information with our community and listened to the stories of those whose experiences will help us drive greater impact for families affected by pancreatic cancer in the future. 

The Change-Makers

One of the most remarkable things about our community is the number of people, organizations, and partners who go above and beyond to advance our shared mission. In 2021, on the heels of a challenging pandemic year, champions of pancreatic cancer research and specialized programs came forward to help us increase momentum in a continually uncertain time. Below, we invite you to meet a few of the many generous donors, advocates, researchers, and organizations who shared their gifts of time, talent, and treasure with our community over the course of the year.

Richard Weldon

After being diagnosed with stage II pancreatic cancer during the pandemic, Richard Weldon underwent surgery, chemotherapy and radiation until he was told there was no evidence of disease left. Richard persevered through the pain and uncertainty and today stands on the other side as a survivor. To acknowledge his journey with this disease, Richard matched over $25,000 in donations to PASS-01 during our campaign with Kernls. He then shared his story with our Chief Executive Officer Michelle Capobianco for The Stage II Project to raise awareness of the patient experience and need for treatment advancement. Read more about Kernls and The Stage II Project below.

Dr. Jennifer Knox

As the trailblazing Primary Investigator of both NeoPancONE and PASS-01, Dr. Jennifer Knox leads two of the most promising pancreatic cancer clinical trials in Canada – both of which were launched amid the pandemic. In our Research section below, you can hear directly from Dr. Knox on the real-life impact PASS-01 is having on Canadian patients.

TELUS

TELUS is more than an extraordinary partner and champion of research, they are part of the pancreatic cancer community. Amidst a global pandemic, they recruited corporate partners to help raise the rate of pancreatic cancer survival through their annual fundraising campaign, giving our community more ways to support our collective mission from the safety of their homes. The result is a record-breaking $183,000 raised, bringing the lifetime total of the campaign past the million dollar mark.

Wellspring

Our Peer Support program with the cancer care experts at Wellspring has been a lifeline to our community, many of whom found themselves managing the stress of a pancreatic cancer diagnosis compounded by the isolation of the pandemic. Our partners at Wellspring rose to the challenge with us, recruiting more volunteers whose experience, compassion, and care assisted with the increased needs of our community.

Dr. Grainne O'Kane

As an investigator for NeoPancONE and PASS-01, Dr. Grainne O’Kane worked closely with Dr. Jennifer Knox to ensure that research could continue to provide real-time treatment options to patients during the pandemic. With a gracious approach to patient care, Dr. O’Kane shares her outlook on the future of pancreatic cancer treatment and the importance of the work we are doing together in the video at left.

Hannah Willey

A dedicated participant in Kathy’s Run, Hannah Willey went the extra mile in 2021 to encourage others to get involved, join the event, and donate by sharing her personal story. Hannah is a proud ambassador for Kathy’s Run and passionate advocate for pancreatic cancer awareness. Hear more from Hannah, including her motivation to get involved, in the video at left.

Joel and Debrah Weiss

When Joel Weiss was diagnosed with pancreatic cancer in 2015, his wife Debrah was with him every step of the way. Now, with the challenges of pancreatic cancer behind them, they generously offer their time and care to patients and caregivers currently battling this disease. By volunteering with our Peer Support program in collaboration with Wellspring, Joel and Debrah have helped patients and caregivers weather the stress of this disease, touching dozens of lives.

Research

After another tumultuous start to the year, we were thrilled that researchers persevered to find safe ways for patients to participate in life-altering clinical trials amid the uncertainty of the ongoing pandemic. Together with renowned scientists, we championed the return of groundbreaking research and it’s real-time impact for pancreatic cancer patients.

 

 

PASS-01

New Clinical Trial Launched

In the midst of a global pandemic, we came together with allied organizations and leading cancer research centres from across North America to launch the PASS-01 clinical trial. PASS-01, which stands for ‘Pancreatic Adenocarcinoma Signature Stratification for Treatment’, is a landmark research investment that draws on the discovery of pancreatic cancer subtypes to advance personalized medicine (also knows as precision medicine) for late-stage pancreatic cancer patients.

This groundbreaking clinical trial involves the collaboration of eight prestigious cancer research centres in the US and Canada; including Princess Margaret Hospital, the Ontario Institute for Cancer Research, and BC Cancer Agency. PASS-01 uses revolutionary organoid technology to personalize treatment options for advanced pancreatic cancer patients, enabling researchers to test multiple novel therapies on a patient’s tumour cells to see which treatment would have the greatest chance at being effective. By studying a potential biomarker called GATA6 and tumour subtypes that were previously identified in the PCC funded COMPASS trial, researchers can better understand the variations seen across different pancreatic cancer cases. This means more personalized — and effective — treatment options for patients; something urgently needed to give patients a greater chance at a longer life.  

2021 marks the second year of a three year funding commitment to this project. PASS-01 is a Stand Up To Cancer Dream Team funded by the Pancreatic Cancer Collective, an initiative of the Lustgarten Foundation and Stand Up To Cancer® (SU2C), SU2C Canada and Pancreatic Cancer Canada.

Patients to be enrolled

Participating Research Centres

Kernls

In 2021 we began a partnership with Kernls: a web-based platform where project Champions match donations made to PASS-01 and receive an inside look at how research progress is made. To offer donors and Champions special insight into early findings of PASS-01, Kernls Founder and CEO Mike Haughton spoke to Primary Investigator Dr. Jennifer Knox. Hear her update in the video at left.

 

NeoPancONE

After making preliminary investments in participating NeoPancONE treatment centres in 2020, wide-spread patient recruitment finally began in 2021. A clinical trial aiming to change the standard of care for operable pancreatic cancer, NeoPancONE involves six rounds of modified FOLFIRINOX chemotherapy before and after surgery, first to shrink the pancreatic cancer tumour and later to eliminate any remaining cancer cells. As this was our second year investing in NeoPancONE, we are excited by the tangible impact this research is already having on patients, with the aim of giving them a greater likelihood of disease free survival.

One critical element that sets NeoPancONE apart from other neoadjuvant trials is the study of a potential biomarker called GATA6, which was discovered during our earlier investments in the COMPASS trial. Researchers are measuring GATA6 in relation to a patient’s response to treatment to discern if this course is more effective for some patients than others based on their genetic make-up.

2021 marked the second year in a three-year investment in this game-changing clinical trial.

Participating Cancer Centres

Patients to be Enrolled

 

HERO-Pancreas

When it comes to an aggressive disease like pancreatic cancer, the window for curative treatment is often short. Time is of the utmost importance for patients, and with that in mind we are proud to share one of our latest investments, HERO-Pancreas.  

This revolutionary study uses wearable technology to collect and track real-time bio-medical data from patients to further our understanding of this disease and see if the body gives a signal as the first sign of progression. These devices not only track responsiveness of treatment, but also provide more in-depth analysis of the patient’s physical and psychological experience, such as their heart and respiratory rate, body temperature, sleep patterns, and activity levels. Patients can also log qualitative data, like changes in mood, in a specialized app. 

The data generated from this project will be shared in a repository that promotes open science, allowing scientists around the world to access the information for use in other studies. By sharing this information with the global research community, we will learn even more about this disease, treat it better and ultimately save more lives quicker and on a larger scale.

HERO-Pancreas is a feasibility study with 60 patients. Those participating in the NeoPancONE trial at Princess Margaret Cancer Centre are automatically eligible to be part of HERO-Pancreas. 2021 was our first year funding HERO-Pancreas, and we are excited for the findings to be utilized on a global scale and inspire further research.

support services

In 2021, support services remained a lifeline for patients, caregivers, and those bereaved by pancreatic cancer. From our Peer Support program with the cancer care experts at Wellspring to our Ask An Expert service, members of our community from coast to coast were able to access information and support free of charge and from the safety and comfort of their homes.  

 

Peer Support

As the Covid-19 pandemic raged on keeping those in our community in steady isolation, we continued to work in partnership with Wellspring to provide specialized support to patients, caregivers and the bereaved. Twenty-one specially trained Peer Support volunteers assisted patients and caregivers while they fiercely battled pancreatic cancer, and consoled bereaved loved ones as they coped with their loss. This is just another way our community went above and beyond to support one another during a universally challenging time.

In 2021 we saw a 22% increase in individuals served, as well as a 79% increase in appointments. The demand for short-term counselling rose by 16% as well, signalling the critical importance of this program for the mental health of our community. The ability to access peer support, counselling, group support, and resources virtually has been a balm to patients and caregivers from coast to coast. 

Your services are needed and greatly appreciated, and I hope that once things get back to ‘normal’ that you maintain the virtual platform because otherwise I would not have been able to access it as I live in eastern Ontario. Thank you so much, it saved my life.”

Peer Support Participant

Peer Support Participant Demographics

  • Patients 45% 45%
  • Caregivers 39% 39%
  • The Bereaved 16% 16%

Peer Support 

Peer Support is the welcome point for our free programs with Wellspring. When a participant reaches out, they are matched with a highly-trained volunteer whose personal experience with this disease is as close as possible to the experience of the participant.

Short-Term Counselling

When someone from our community needs a little extra support, they are connected with a professional counsellor from Wellspring as part of our Short-Term Counselling service, entirely of charge.

 

Ask An Expert

Navigating cancer care amidst the ongoing COVID-19 pandemic has become a challenge for many in our community. With the significant strain on our healthcare system causing many appointments to be delayed or cancelled, patients were left to do their own research and advocate for the care they needed. We know that every moment matters when it comes to diagnosing and ultimately treating pancreatic cancer, and we continued to empower our community by offering our Ask An Expert program, completely free of charge.  

In 2021, 91% of inquiries came from new participants, with a 200% increase in requests compared to our short-term pilot program in 2020. Patients and caregivers engaged with our program from across the country, seeking support on topics such as treatment options, clinical trials and genetic testing. 

Information requests

Common Question Topics

  • Treatment Options 42% 42%
  • Diagnosis 22% 22%
  • Clinical Trials 15% 15%
  • Genetic Testing 11% 11%
  • Diet and Nutrition 10% 10%

AWARENESS AND OUTREACH

As Canadians continued to exercise caution and stay safely at home during the second year of the pandemic, it became increasingly important to find innovative, accessible, and attention-grabbing ways to reach out to our community and the Canadian public. 

 

New Normal, Same Cancer

As the pandemic continued through 2021, we knew we had to keep motivating Canadians to put their health first and not wait to see their doctor if they felt like something was wrong. In these challenging times — and when it comes to a deadly disease like pancreatic cancer — self-advocacy is absolutely critical.

The New Normal, Same Cancer initiative was created in response to a startling statistic in early 2020: it was estimated that cancer diagnoses had declined by 40% globally, primarily due to cancelled or delayed appointments and an understandable hesitancy from patients to go the doctor with the threat of Covid-19 looming.

In recognition of World Cancer Day on February 4th, we worked together with dozens of cancer charities and allied organizations from across the country to encourage Canadians to reach out to their healthcare team with their concerns. Cancer doesn’t wait, so when it comes to personal health, neither should you. 

 

Awareness and Outreach Initiatives

End-Stage Cancer Survey

Pancreatic cancer patients face some of the most difficult odds of those diagnosed with cancer in Canada. Until we can meaningfully raise the survival rate through research advancements, we need to do more to support those who will not survive. This is why we launched our End-Stage Cancer Survey in 2021, to hear directly from patients, caregivers, and those bereaved by this disease about the gaps in care so we can work with our partners to make the experiences of our community as informed, comfortable and dignified as possible.

Click here to learn more and respond to the survey.

 

The Stage II Project

Pancreatic cancer is an extremely challenging disease – even in the relatively rare case when it is diagnosed at an early stage. In late 2021, our Chief Executive Officer Michelle Capobianco was diagnosed with stage II thyroid cancer. Within weeks of her diagnosis, she began chronicling her cancer journey alongside PASS-01 Champion Richard Weldon and other stage II pancreatic cancer patients to demonstrate the immense disparity in research advancements, treatment options, reputation, and outcomes between these two cancers. 

Click here to read through The Stage II Project.

 

People need to understand what it is to ‘hope’. ‘Hope’ is something that must be fluid and ever-changing. Hope isn’t just about the person miraculously being cured, hope can also mean a good death with pain managed through palliative care. I am proud to say that my dad had a good death. 

End-Stage Cancer Survey Respondent

 

Allied Organizations

L

World Pancreatic Cancer Coalition

As a founding member of the World Pancreatic Cancer Coalition, we continued our important work of raising awareness for this disease during World Pancreatic Cancer Awareness Month in November and throughout the year together with over 80 allied organizations from around the world.

L

Union for International Cancer Control (UICC)

Bringing the plight of pancreatic cancer patients to the world forum, we continued our work with the UICC as the only member organization dedicated to advancing progress for this disease. We look forward to our continued representation of the needs of pancreatic cancer patients in the years to come.

 

UNAPOLOGETIC: The PCC Podcast

To mark Pancreatic Cancer Awareness Month, we launched our inaugural podcast, UNAPOLOGETIC. We chose to call our podcast UNAPOLOGETIC because it describes how we approach everything that we do at Pancreatic Cancer Canada: from our brand and the honesty with which we talk about this disease, to the bold and trailblazing ways we are working to raise the rate of pancreatic cancer survival. Being unapologetic is engrained in the very culture of PCC, because ‘sorry’ doesn’t save lives.

The first episode featured a fire-side chat with our Chief Executive Officer Michelle Capobianco and Board Chair Dr. Anish Kirpalani, who described the origins of the organization, how it has evolved over the years, and the progress that is on the horizon.

Look for the first full season of UNAPOLOGETIC in the fall of 2022.

“I had the misfortune of having any radiologist’s worst nightmare come true. I diagnosed my own mom with pancreatic cancer.”

– Dr. Anish Kirpalani, PCC Board Chair 2018-2022
UNAPOLOGETIC Episode 1

 

IN THE NEWS

Spotlight: Joel and Debrah Weiss

Peer Support Volunteers Joel and Debrah Weiss Give Back In the fall of 2015, Joel Weiss started experiencing pain in his mid-back. It persisted enough that he reached out to his doctor, who ordered an ultrasound and bloodwork. The results revealed that his lipase...

Spotlight: Dr. Shiva Jayaraman

Dr. Shiva Jayaraman speaks to PCC about beginning recruitment for the NeoPancONE trial at St. Joseph’s Health Centre and how he grew one of Canada’s highest-volume pancreatic cancer treatment programs.

PASS-01 Announcement: A Message from Michelle Capobianco

Today I am thrilled to announce the launch of our next landmark research investment, PASS-01: a clinical trial that will finally address the diverse nature of this disease and provide personalized treatment options for advanced pancreatic cancer patients....

New Clinical Trial Studies Pancreatic Cancer Tumour Traits To Uncover Better Treatment Options

New Clinical Trial Studies Pancreatic Cancer Tumor Traits to Uncover Better Treatment Options  NEW YORK – March 30, 2021 – A new team of pioneering pancreatic cancer researchers has been formed to predict which treatments might work best for...

Webinar: What You Need to Know About Wills

What you Need to Know About Wills in 40 Minutes On Demand WebinarWith so much to consider, we know creating or updating your will can be a daunting task. That's why we asked Certified Executor Advisor Walter Viner to share some important advice with our community in a...

World Cancer Day 2021 – New Normal Same Cancer

Canadian Oncology Community Unites For World Cancer Day: Shedding Light on the Impact of Covid-19 on Cancer Care  Oncologists estimate cancer diagnoses down 25 per cent in some areas as a result of COVID-19 Some oncologists are also reporting an increase in later...

Thank you

 

We could not have persevered through another uncertain and challenging year without the unwavering support of our community. From donors and sponsors to our incredible board of directors to the hundreds of patients, caregivers and family members we connected with, every interaction and every dollar has helped us make the progress you have read about today and set the stage for critical advancements on the horizon. With the strength and dedication of our community, we will continue to persevere together to meaningfully raise the survival rate of this disease. 

Thank you for your enduring support. 

 

We want to hear from you

Get In Touch

Follow Us

subscribe to our newsletter

The survival

guide

316-4211 Yonge Street
Toronto, ON M2P 2A9
Toll Free: 1-888-726-2269

info@pccf.ca
Charitable Registration Number 84870 1967 RR0001