Pancreatic Cancer Action Network

2013 Impact Report

One Day

Of Research

APR 2 – Two $1 million grants – the largest ever – are awarded as part of our more than $5 million research portfolio.

In Washington

JAN 2 – The Recalcitrant Cancer Research Act is signed into law by President Obama. This landmark legislation requires the National Cancer Institute to develop a scientific framework for pancreatic cancer to provide strategic direction toward making true progress.

Of Hope

JAN 24 – Patient and Liaison Services (PALS) serves its 70,000th contact since the start of the program in 2002.

Of Action

JUN 8 – More than 300 Union Pacific employees in Nebraska form 20 individual teams as part of an inter-department fundraising challenge, pushing the company’s contributions over its $100,000 goal for PurpleStride Omaha.

One Day, there will be a breakthrough that changes everything.

President's Letter

Every day of the past year, we’ve been working diligently toward making our goal of doubling pancreatic cancer survival by 2020 a reality.

As our fight against pancreatic cancer gains momentum, we are proud of the impact we’ve made over the last 14 years, but we are particularly proud of the progress we’ve made in Fiscal Year 2012-13. Since our last report, our supporters — volunteers, survivors, donors, advocates, scientists and healthcare professionals — have not only grown in numbers, giving additional strength to the cause, but their actions have made a real difference in moving the mission of the organization forward.

The year began auspiciously with President Obama signing the Recalcitrant Cancer Research Act into law. The bill’s passage

Defeating pancreatic cancer has at last become a matter of national will and political commitment.

makes pancreatic cancer a national priority. In addition, not only are more scientists studying pancreatic cancer and receiving funding from our growing pool of research grants, the communication and collaboration among these committed individuals are also increasing. The Pancreatic Cancer Action Network has been instrumental in facilitating this vital collaboration among researchers at diverse institutions and with various areas of expertise.

Determination and perseverance led to the passage of the Recalcitrant Cancer Research Act in January 2013.

True heroes on the front lines are working with us every day to change the course of history for pancreatic cancer.

Meanwhile, our unrelenting volunteers who support the organization in significant ways through events and awareness-raising efforts have grown our affiliate base to nearly 60 robust affiliates nationwide.

These committed volunteers vastly increase the influence of our network. Everywhere, you can find evidence of their impact when droves of purple-clad individuals turn out for volunteer-led PurpleStride walks, runs and rides.

At our Southern California national office, we’ve been making strides through our PALS (Patient and Liaison Services) team by putting thousands of patients in touch with cutting-edge research through potential clinical trial opportunities as well as providing disease-specific information about diagnosis, treatment, support resources and other related topics.

The report that follows provides detailed accounts from the front lines, where our true heroes — volunteers, survivors, donors, advocates, scientists and healthcare professionals — work tirelessly toward our goal of doubling pancreatic cancer survival by 2020. We have no illusions. It is, to be sure, still an uphill push. But with growing momentum propelling us forward, more and more supporters are drawn to our cause, not because it is easy, but because it promises to change the lives of the people they love and many more who will benefit from their selfless commitment.

President's Signature

Julie Fleshman, JD, MBA President and CEO

Our Story

The Pancreatic Cancer Action Network began one day 14 years ago at the kitchen table of a woman with a bold vision.

Driven by the loss of her mother to pancreatic cancer, Pamela Acosta Marquardt envisioned a team of passionate, committed volunteers, advocates, research scientists, healthcare professionals and other generous contributors working together to create awareness for this tragic disease.

Thanks to that vision, people have rallied together to translate sadness and anger into action since 1999.

What started as a lonely path has become a busy thoroughfare leading to options, support, discoveries and hope. And with continued action and passion, the progress being made today will one day bring an end to this devastating disease that takes more than 38,000 lives each year.

Thanks to a vision, passionate people have rallied together since 1999 to translate sadness and anger into action, and in turn they have created unprecedented awareness for pancreatic cancer.

Since its inception, the Pancreatic Cancer Action Network has worked to build critical mass in the community of scientists studying pancreatic cancer.

It Started with a Strategy

There were scarcely a dozen scientists studying pancreatic cancer full-time in 1999, the year of our founding. As a result, the survivorship needle, in the single digits, had not budged.

Building a critical mass of scientists was the only way to move that needle. Acutely aware that science follows money, we began charting a course to bring more dollars to pancreatic cancer research. We knew it would be an uphill climb, but with a focused strategy, clear vision and an attainable mission, we also knew progress was achievable. Increased federal research funding, combined with private research dollars, would create an incentive for scientists to study the disease and move pancreatic cancer research out of no-man’s-land.

Step by Step, with a Purpose

A Growing Grassroots Movement

Early on, we took our message to Washington, D.C., with a handful of volunteers gathering on Capitol Hill to tell their members of Congress that pancreatic cancer research funding had been ignored for too long. Grassroots advocacy success fueled the creation of our Government Affairs & Advocacy program, allowing us to be organized and effective in raising our voices on Capitol Hill – and, finally, Congress is listening. The Recalcitrant Cancer Research Act, formerly the Pancreatic Cancer Research and Education Act, was signed into law in January 2013. Read more.

Taking Research Further

In addition to advocating for increased federal dollars, the organization funded its first research grant in 2003 through a strategy that would encourage the best scientific ideas and also recruit scientists into the field. This strategy has proven effective. To date, we have awarded 94 research grants to outstanding scientists at institutions across the country, and a recent evaluation showed that every dollar that we invest is leveraged, on average, into $9.93 in additional pancreatic cancer research funding by our grantees. This is encouraging evidence that they are staying in the field and remaining committed to pancreatic cancer research. Read more.

Spreading the Word

We continued to raise our voices and, thus, awareness about the disease, and began to spread the word that there was hope for those battling pancreatic cancer. We created the Patient and Liaison Services (PALS) program to give pancreatic cancer patients, families and caregivers comprehensive information about the disease so that they could make informed decisions. We also knew how essential it was to make sure patients had access to the latest research through clinical trials, because clinical trials are the key to discovering new treatment options and early diagnostic tools. So we went on to build a proprietary, searchable database of all enrolling pancreatic cancer clinical trials in the United States. Read more.

Making Big Strides

Our message soon reached even more people – volunteers were holding community walks and other events designed to raise awareness and funding for pancreatic cancer. Fifty-eight volunteer-led affiliates across the country have since developed, and the walks, now known as PurpleStride, have become a signature event of the Pancreatic Cancer Action Network. Volunteers not only plan events, they advocate, educate and raise awareness about pancreatic cancer in their communities. Read more.

Our Community

The Pancreatic Cancer Action Network was founded on community. We have had success because of it. Our strategy is devoted to it.

Our community is bonded by stories, connectedness, passion and heart, and grows everywhere – in big cities, small towns and close-knit neighborhoods nationwide. The sense of community radiates through our staff and our extensive volunteer network.

Volunteers were there from our humble beginnings, and they remain the heartbeat of the Pancreatic Cancer Action Network. We are eternally grateful for their contributions.

A strong sense of community among all of our supporters plays a critical role in our growth and success.

This Year

A Strategy for Success

Our comprehensive strategy of funding research through private donations, advocating for increased federal research dollars and making sure patients have access to cutting-edge research is what sets the Pancreatic Cancer Action Network apart from other organizations. This strategy is successful because of the passion and dedication of our donor and volunteer network – a network that has fueled a powerful and relentless pancreatic cancer movement that allows us to push each of these goals forward.

With the power of a growing movement, we set a goal to double survival for pancreatic cancer by 2020.

We will continue to make advances against pancreatic cancer to achieve our Vision of Progress. But our work doesn’t end there.

With a long-term vision and a focused strategy, one day we’ll see the final breakthrough.

Enthusiastic participants showed their purple passion at PurpleStride New York City in April 2013.

Giving Thanks

Thank you to all those who have been part of our journey so far. Thank you to those who remain committed to the cause through your energy, generosity and leadership, and to those who will join us this year, when, as a community, we will continue the fight with the help of our committed donors and volunteers.

Key Accomplishments in 2012-13

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We awarded 14 research grants totaling more than $5.045 million, our largest research disbursement to date.

Read next

Imagine the progress that will be made in the coming decade.

The first Pancreatic Cancer Action Network grant was launched in 2003 to attract junior scientists into the field and encourage them to build a career in pancreatic cancer research.

In the years that have followed, we’ve created grants that attract a range of experience levels and scientific ideas, with the belief that you never know which key will unlock the door to a cure. Our portfolio of grants helps bring us closer to achieving our goals.

We know that for every dollar invested in our grantees, they go on to leverage that into, on average, $9.93 in additional pancreatic cancer research funding, proving that they are doing good work and staying in the field of pancreatic cancer. Our research grants program connects the grantees to each other through a “Community for Progress,” providing networking and mentorship, the chance to meet pancreatic cancer survivors and families, opportunities to speak with members of Congress about the urgent need for further funding, and more. This community adds a unique emotional touch-point and opportunity for idea-sharing that has resonated within our scientific community.

Scientists have made significant progress over the last decade in understanding pancreatic cancer, gaining insights into why it is so difficult to treat, and in beginning to identify clever ways to attack these problems. Just imagine the progress that will be made in the coming decade.

Scientists have made significant progress over the past decade in understanding more about pancreatic cancer.

By The Numbers:

Grants awarded in 2012-13

Read next

We rigorously evaluated our research grants program in early 2013. For more information on our findings, click here.

Years of perseverance meant that, this year, Congress had no choice but to listen.

From our earliest days, our deeply passionate, ever-committed supporters have advocated diligently, purposefully, strategically and unrelentingly for increased federal funding for pancreatic cancer research. And over the years, we have seen the numbers climb: Funding from the National Cancer Institute (NCI) for pancreatic cancer has moved from just over $17 million in 1999 to nearly $105 million in 2012, a 517 percent increase. While this increase is impressive, the funding level is far below what is needed to make true progress in this disease. We also needed a national strategic plan for advancing pancreatic cancer research.

On January 2, President Obama signed into law landmark legislation that will help create that national strategic plan. The Recalcitrant Cancer Research Act requires the NCI to create a scientific framework for accelerating progress and improving patient outcomes. Of the 10,500 bills introduced in the 112th Congress, only 193 became law. The Recalcitrant Cancer Research Act was one of the less than 2 percent that passed.

Some would call it a herculean effort; it took five years of in-person visits and thousands and thousands of phone calls, emails and letters to elected officials to educate them about pancreatic cancer and the need to increase federal research funding dedicated to studying the disease.

Our community moved mountains to get the bill passed. And today, we are poised to make new strides in the fight against pancreatic cancer.

More than 500 advocates from all 50 states attended the seventh annual Pancreatic Cancer Advocacy Day in June 2013.

By The Numbers:

Increase in NCI pancreatic cancer research funding in 2012-13. Overall NCI funding decreased during this same time

Read next

The PALS program is the only patient support program of its kind.

Patient and Liaison Services (PALS) is a comprehensive service providing patients and families with immediate and free information and education about pancreatic cancer, diagnosis, treatment options, clinical trials, diet and nutrition, specialists and support resources. The goal of the program is to help patients and their families learn about and understand their options so that they may make informed choices together with their healthcare teams.

New treatments are critical to changing patient outcomes, achieving our Vision of Progress to double the survival for pancreatic cancer by 2020 and ending pancreatic cancer. But clinical trials that lead to new treatments are only as successful as the number of patients who are aware of them and enroll.

PALS encourages all patients to consider clinical trials each time they explore treatment options. PALS Associates are able to perform up-to-date, customized clinical trial searches for patients, thanks to our comprehensive, proprietary in-house clinical trials database.

Our PALS program has served more than 75,000, offering immediate and free access to information about pancreatic cancer.

By The Numbers:

PALS has assisted more than 75,000 contacts since the program’s inception

Read next

It’s clear that people plus passion equals progress.

Major events such as PurpleStride – our signature walk/run planned and hosted by volunteers – increase awareness of pancreatic cancer and the organization, educate local communities about the disease and raise valuable funds.

We also support an army of volunteers as it distributes patient information to hospitals and doctors’ offices, contacts the media and alerts elected officials about the urgent need for scientific progress in pancreatic cancer research. The passion and commitment of our volunteers have created a growing movement that propels our mission forward in each program area.

Within each of the organization’s 58 affiliates, there is an official volunteer structure in place that includes volunteer Affiliate Coordinators, Event Coordinators, Media Representatives, Education & Outreach Coordinators, Advocacy Coordinators, Volunteer Chairs, Sponsorship Chairs and Event Chairs. Community Representatives and Community Advocates further support the mission in strategic, mission-oriented ways in additional communities nationwide. These volunteers sign agreements to officially participate in leadership roles. Each official volunteer role has a committee made up of passionate volunteers that help fulfill the organization’s mission in their community.

An army of volunteers nationwide has created a growing movement that propels our mission forward.

By The Numbers:

Signature events, including PurpleStride/Ride/Swim and Gala events in 2012-13

Read next

Donors & Volunteers

Click the links below to see individual donors:

To view individual donors, please select a donation range and click the 'view donors' link below.

Cumulative Lifetime Giving:

Donations received from
July 1, 2012 to June 30, 2013:

Thank you to those who remained committed to the cause this year with energy and guidance. As a community, we will continue the fight.

View Volunteers
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$2,000,000+

Cumulative Lifetime Giving

  • Anonymous Donor
  • Genentech Inc.
  • Tempur-Pedic North America, LLC
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Board of Directors

Board of Directors

  • Laurie MacCaskill
    Chair
    Los Angeles, CA
  • Julie Fleshman, JD, MBA
    President and CEO
    Los Angeles, CA
  • Peter Kovler
    Washington, DC
  • Terrence Meck
    New York, NY
  • Stuart E. Rickerson
    Secretary
    Rancho Santa Fe, CA
  • Jeanne Ruesch
    Vice Chair
    Chevy Chase, MD
  • Cynthia Stroum
    Founding Chair Emeritus
    Seattle, WA

Medical Advisory

  • Vincent J. Picozzi, MD
    Chair
    Virginia Mason Medical Center
    Seattle, WA
  • Jordan Berlin, MD
    Vanderbilt-Ingram Cancer Center
    Nashville, TN
  • Marcia I. Canto, MD
    Johns Hopkins University
    Baltimore, MD
  • Christopher Crane, MD
    MD Anderson Cancer Center
    Houston, TX
  • James Farrell, MD
    Yale University School of Medicine
    New Haven, CT
  • George A. Fisher, Jr., MD, PhD
    Stanford University
    Palo Alto, CA
  • Jason B. Fleming, MD
    MD Anderson Cancer Center
    Houston, TX
  • Jane Hanna, RN, OCN
    Georgetown University Hospital
    Washington, DC
  • Joseph M. Herman, MD, MSc
    Johns Hopkins University
    Baltimore, MD
  • Mokenge Malafa, MD
    Moffitt Cancer Center & Research Institute
    Tampa, FL
  • Eileen O‘Reilly, MD
    Memorial Sloan-Kettering Cancer Center
    New York, NY
  • Maria Petzel, RD, CSO, LD, CNSC
    MD Anderson Cancer Center
    Houston, TX
  • Philip Agop Philip, MD, PhD
    Kamanos Cancer Center
    Farmington Hills, MI
  • Mark Pochapin, MD
    New York University
    New York, NY
  • Mark Talamonti, MD
    Northshore University HealthSystem Evanston, IL

Scientific Advisory

  • Anirban Maitra, MBBS
    Chair
    MD Anderson Cancer Center
    Houston, TX
  • Dafna Bar-Sagi, PhD
    New York University
    New York, NY
  • Sunil Hingorani, MD, PhD
    University of Washington
    Seattle, WA
  • Michael Hollingsworth, PhD
    University of Nebraska Medical Center
    Omaha, NE
  • Christine Iacobuzio-Donahue, MD, PhD
    Johns Hopkins University
    Baltimore, MD
  • Kimberly Kelly, PhD
    University of Virginia
    Charlottesville, VA
  • Steven Leach, MD
    Johns Hopkins University
    Baltimore, MD
  • Frank McCormick, PhD, FRS
    University of California, San Francisco
    San Francisco, CA
  • Gloria Petersen, PhD
    Mayo Clinic
    Rochester, MN
  • Anil Rustgi, MD
    University of Pennsylvania
    Philadelphia, PA
  • Diane Simeone, MD
    University of Michigan
    Ann Arbor, MI
  • Margaret Tempero, MD
    University of California, San Francisco
    San Francisco, CA
  • Craig Thompson, MD
    Memorial Sloan-Kettering Cancer Center
    New York, NY
  • Robert Vonderheide, MD, DPhil
    University of Pennsylvania
    Philadelphia, PA
  • Geoffrey Wahl, PhD
    Salk Institute for Biological Studies
    La Jolla, CA

2012-13 Financial Results

Statement of Activities Year ended June 30, 2013
Statement of Financial Position Year ended June 30, 2013
Statement of Activites
Revenue 2013 2012
Contributions $8,964,579 $7,120,972
Special Events — Net 10,705,207 8,771,804
Investments, store and other 218,594 571,388
Net Revenue Sources 19,888,380 16,464,164
Expenses 2013 2012
Program Services
Research 6,914,781 5,032,781
Advocacy 2,208,453 1,912,723
Patient Services 2,655,869 2,418,367
Community Outreach 4,817,307 3,749,048
Total Program Services 16,596,410 13,112,919
Supporting Services
General and Administrative 587,363 500,645
Fundraising 1,737,180 1,454,887
Total Supporting Services 2,324,543 1,955,532
Total Expenses 18,920,953 15,068,451
Increase in Net Assets $967,427 $1,395,713
Statement of Activites
Assets 2013 2012
Cash and cash equivalents $1,662,657 $1,450,462
Investments 11,060,486 8,514,725
Pledges and Sundry receivables, net 2,447,207 1,456,975
Prepaid expenses and inventory 365,780 596,790
Property and equipment, net 722,370 694,539
Other assets 101,898 77,305
Total Assets $16,360,398 $12,790,796
Liabilities and Net Assets
Liabilities
Accounts payable, accrued and other liabilities $1,275,797 $1,165,631
Grant obligations 5,759,930 3,271,280
Deferred lease liability 620,517 617,158
Total Liabilities 7,656,244 5,054,069
Net Assets
Unrestricted 7,688,805 6,984,947
Temporarily restricted 1,015,349 751,780
Total Net Assets 8,704,154 7,736,727
Total Liabilities and Net Assets $16,360,398 $12,790,796

Total Revenue 2000-13

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Revenue Contribution by Source 2003-13

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Cost Distribution 2003-13

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These financial statements were abstracted from Pancreatic Cancer Action Network's June 30, 2013 and June 30, 2012 financial statements, which were audited by Windes & McClaughry Accountancy Corporation. Because the information does not include all the disclosures required by U.S. generally accepted accounting principles, it does not purport to present Pancreatic Cancer Action Network's financial condition or results of activities. A copy of the audited financial statements is available online and can also be provided upon request from our national office.

Total Revenue 2000-13

2013 Total Revenue Chart
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Revenue Contribution by Source 2003-13

Click on years above to see contributions by individual year.

Created with Raphaël 2.1.0Total Revenue for 2013$19,888,380
  • orange An Evening with the Stars (4%)
  • red Volunteer-driven events (49%)
  • blue Individual (21%)
  • green Foundation (9%)
  • pink Corporate (16%)
  • yellow Investments and other (1%)
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Cost Distribution 2003-13

Click on years above to see distribution by individual year.

Created with Raphaël 2.1.0Total Cost for 2013$18,920,953
  • Green Research Grant Costs (28%)
  • Red Research & Scientific Affairs (8%)
  • Orange Community Outreach (26%)
  • Blue Patient Services (14%)
  • Yellow Advocacy (12%)
  • Pink Fundraising (9%)
  • Purple General & Administrative (3%)
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