PLATINUM2021

Marc Lustgarten Pancreatic Cancer Foundation

aka Lustgarten Foundation   |   Woodbury, NY   |  http://www.lustgarten.org

Mission

The mission of the Lustgarten Foundation is to CURE PANCREATIC CANCER by: • Funding scientific and clinical research related to the diagnosis, treatment, and prevention of pancreatic cancer • Providing research information and clinical support services to patients, caregivers and individuals at high risk • Increasing public awareness and hope for those dealing with this disease.

Notes from the nonprofit

As we work on building a more inclusive Board of Directors, we also have taken steps to ensure the Scientific Advisory Board and Translational Advisory Board represent a diverse group of scientists and healthcare professionals in terms of ethnicity, geography and specific areas of cancer research.

Ruling year info

1999

CEO

Mrs. Linda Tantawi

Main address

415 Crossways Park Dr. Suite D

Woodbury, NY 11797 USA

Show more contact info

EIN

31-1611837

NTEE code info

Cancer (G30)

Diseases of Specific Organs (G40)

Other Medical Research N.E.C. (H99)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Pancreatic cancer has no early warning signs, and there are currently no effective screening tests. As a result, pancreatic cancer is usually discovered late, and the diagnosis is often not made until the cancer has spread to other areas of the body. Before 2030, pancreatic cancer is expected to be the second-leading cause of cancer-related deaths in the United States, second only to lung cancer. Currently, the overall five-year survival rate for pancreatic cancer is just 10% and most patients with advanced disease die within a year. This year alone, more than 160 Americans will be diagnosed daily. Given the increasing incidence rate and the poor survival rate, it is crucial that new treatments and new methods for early detection are discovered, so patients can have more options, more time with their loved ones and a better quality of life. The Foundation's goal is to transform pancreatic cancer into a curable disease, providing the potential for more tomorrows for all patients.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Pancreatic Cancer Research; Research Grants & Awards; Patient Information Services

The Lustgarten Foundation is the world's largest private funder of pancreatic cancer research and has directed $200 million to research. Lustgarten-funded science has been a driving force in every major advancement in pancreatic cancer research. When Marc Lustgarten was diagnosed in 1998, little was known about the disease and its causes. The Foundation was created to change that reality. Our research program has evolved to concentrate on three areas of patient need:
• Earlier Detection: Develop/deliver tools for early diagnosis, such as biomarkers for early detection in the general population and approaches for risk assessment and management of high-risk groups
• Drug Development: Accelerate the development of therapies, identifying novel drug targets and advancing testing of new drugs and combinations in pancreatic cancer
• Personalized Medicine: Implement a personalized medicine program to guide treatment decisions matching the right treatment to the right patient at the right time

Population(s) Served
Health
Family relationships

Blood Test:
Most pancreatic cancers are detected after the disease has metastasized, making treatment more challenging and allowing only 20% of patients to qualify for surgery. CancerSEEK is a blood test to detect many cancers based on diagnostic innovation and established cancer biology curated by Lustgarten-funded researcher Dr. Bert Vogelstein and his colleagues at Johns Hopkins. New technologies are still being developed to improve the test’s accuracy. Exact Sciences, a diagnostic company specializing in the detection of early-stage cancers, will launch a trial seeking FDA approval.

Artificial Intelligence:
Johns Hopkins researchers led by Elliot Fishman, MD, are harnessing the power of machine learning, or artificial intelligence, to detect tiny, early-stage tumors on CT scans. The FELIX program uses data from thousands of scans to teach computers to detect tumors small enough to be missed by even the most experienced radiologists.

Population(s) Served
People with diseases and illnesses
Families
Caregivers

The Lustgarten Foundation is the only non-profit to fund five Dedicated Pancreatic Cancer Research Labs. These labs are focused on specific goals and are given the resources and the freedom to build the right teams, adapt to the science and be innovative in their approach. With a commitment to collaboration and innovation, these labs are strategically aligned to shift the pancreatic cancer research landscape—from diagnosis to treatment to higher survival rates.

Cold Spring Harbor Laboratory: Focusing on Personalized Medicine to Customize Treatments (Led by David Tuveson, MD)
Dana-Farber Cancer Institute: Advancing Translational Research from the Lab to the Clinic (led by Bert Vogelstein, MD)
Johns Hopkins: Accelerating Early Detection and Therapeutics (led by Bert Vogelstein, MD)
Johns Hopkins Clinical Lab: Furthering Immunology for Pancreatic Cancer (led by Elizabeth Jaffee, MD)
MIT: Merging Technology and Engineering (led by Tyler Jacks, PhD)

Population(s) Served
Health
Caregivers
Families

Lustgarten partnered with Stand Up To Cancer in 2012 and in 2018 formed the Pancreatic Cancer Collective, a joint initiative making groundbreaking progress in identifying new ways to treat pancreatic cancer and improving outcomes for patients. The Collective is conducting nearly 30 clinical trials involving more than 400 researchers at 70 institutions. Four projects supported by the Collective's "New Therapies Challenge" grants have led to 9 clinical trials, 5 of which are underway, and amounting to a $16 million investment. The grants explore:
-Targeted delivery of radiotherapies
-Vaccines against mutant KRAS, the mutation found in more than 90% of pancreatic cancers
-Combination strategies to address mutations with DNA damage repair deficiencies
-KRAS activation

The Collective also awarded 2 grants for computational approaches using artificial intelligence to mimic human reasoning and identify individuals in the general population who are at high risk for pancreatic cancer.

Population(s) Served
Caregivers
Families
Health

The CAI, guided by the Translational Advisory Group (TAG), shortens the time from clinical trial concept to launch and allows researchers to develop new clinical trials based on the best available science employing cutting-edge biomarkers. These "smarter" clinical trials, consisting of just 10-20 patients each, generate data to expedite new treatments. Three new CAI clinical studies explore vaccines and new drug combinations. The CAI supports the PASS-01 trial, designed to predict which treatments may work best for individual pancreatic cancer patients based on the molecular traits of their tumors. Researchers create and analyze each patient's organoid, a 3D cell culture of a patient's tumor, to determine if organoids can accurately predict the most effective first-line therapy. The CAI also conducts a trial of an immunostimulant, combined with a PD-L1 inhibitor, to determine if this combination will activate a patient's own tumor-killing T cells to shrink pancreatic tumors.

Population(s) Served
Caregivers
Health
Families

As a catalyst in pancreatic cancer research, the Foundation spearheads grant programs such as:
Lustgarten Foundation-AACR Career Development Awards for Pancreatic Cancer Research in honor of Ruth Bader Ginsburg and John Robert Lewis: In honor of role models Supreme Court Justice Ruth Bader Ginsburg and Congressman John Robert Lewis, who both died of pancreatic cancer, the Foundation created two 3-year, $300,000 career development awards to address the need for greater gender and racial diversity in the pancreatic cancer research community.
Therapeutics-Focused Research Program: This program enables researchers to identify new therapeutic approaches and/or drug targets to ensure a robust pipeline of potential treatments. Projects address 4 key areas of pancreatic cancer biology designed to prevent metastasis, stop tumor cell growth, penetrate the stroma so treatment can reach the tumor; and determine how to block the inflammatory signals that can lead to pancreatic cancer.

Population(s) Served

The Foundation is committed to helping survivors, patients and families find community, raise awareness and drive funds to research, transforming fear into action. Lustgarten events provide people a voice and a place to create hope, together.
-Walks for Research: The Foundation organizes walks across the country, bringing together the pancreatic cancer community for an inspiring day of hope and healing and a chance to be part of the cure.
-Fundraise Your Way Community Events: The Foundation offers online fundraising platforms to develop unique campaigns or events in person or virtually. Supporters also organize over 200 community events annually, inspiring their families, friends and communities to join the fight to transform pancreatic cancer into a a curable disease.
-The Foundation provides free resources including monthly Twitter #PancChats, Pancreatic Cancer Connections online forum through Inspire.com and Navigating Pancreatic Cancer: A Guide for Patients & Caregivers.

Population(s) Served
People with diseases and illnesses
Caregivers
Families
People with diseases and illnesses
Caregivers
Families

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Cumulative investment in pancreatic cancer research

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses, Caregivers

Related Program

Pancreatic Cancer Research; Research Grants & Awards; Patient Information Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The Lustgarten Foundation funds the world's preeminent pancreatic cancer researchers, driving the pursuit of bold and innovative science toward earlier detection and better treatments and transforming pancreatic cancer into a curable disease. Our mission is to cure pancreatic cancer by funding scientific and clinical research related to the diagnosis, treatment and prevention of pancreatic cancer; providing research information and clinical support services to patients, caregivers and individuals at high risk; and increasing public awareness and hope for those dealing with the disease. To date, the Foundation has invested more than $200 million in more than 300 pancreatic cancer research projects, amounting to approximately two-thirds of the world's private funding for pancreatic cancer research from organizations solely focused on this disease. In 2021, the Foundation is investing $24 million in pancreatic cancer research targeted on three key research areas: early detection, personalized medicine and new drug development. Projects are prioritized based on need and impact and focus on programs advancing discoveries to the clinic.

With our approach to research, we have three overarching strategies: 1. Ensure all research we fund will impact patients directly, either now or in the future. 2. Form vital collaborations with leading research organizations, such as Stand Up To Cancer, to leverage our funding and to jointly support innovative and groundbreaking research with multi-disciplinary teams of experts across multiple institutions. 3. Fund the best researchers in pancreatic cancer who are pursuing high-risk, high-reward science and who are committed to advancing the best science to transform pancreatic cancer into a curable disease.

For fundraising, we conduct multiple Lustgarten Walks for Research annually throughout the country and several large fundraisers, all designed to raise awareness, increase research funding and provide a voice and a place for the pancreatic cancer community to join and create hope, together. We also support approximately 200 community events annually, ranging from bake sales to golf outings to college campus fundraisers. We cultivate relationships with donors, patients and survivors by mail, email and in person and share their stories on our website, in emails and on our social media channels to inspire others.

Our strategies for achieving our goals tie into one of our four overarching pillars:
-Research is Fundamental: Research produces real results. It is the only way to fundamentally improve pancreatic cancer outcomes.
-Time is Everything: Pancreatic cancer research is advancing faster than ever before, driving ne breakthroughs in early detection, drug development and precision medicine, giving patients the best chance for survival and quality of life.
-Progress is Paramount: Pancreatic cancer represents only 3% of all cancers diagnosed in the U.S. each year, yet it is the third leading cause of cancer deaths. The Foundation ushered in a new era in pancreatic cancer research to achieve breakthroughs and improve survival.
-Community is Power: We help survivors, patients and families find community, raise awareness and drive funds to research, ultimately transforming fear into action.

The Lustgarten Foundation is a catalyst in the field of pancreatic cancer research and is uniquely positioned to fulfill our mission for several reasons. 1. 100% of donations fund lifesaving pancreatic cancer research. We can allocate every dollar of every donation we receive to urgently-needed research funding. 2. Our Scientific Advisory Board is comprised of renowned scientists at the top of their fields who employ a rigorous review process to determine what projects we will fund, based on our three areas of focus: early detection, personalized medicine and new treatments. 3. We require yearly progress reports to ensure projects are meeting goals and deadlines, and we hold an annual scientific meeting to collaborate, share ideas and research progress and brainstorm new directions for research. 4. The Foundation has established five dedicated pancreatic cancer research laboratories at Cold Spring Harbor Laboratory (Long Island, NY), Dana-Farber Cancer Institute (Boston), two labs at Johns Hopkins (Baltimore) and Massachusetts Institute of Technology (Boston). Together, these facilities position the Foundation as the only non-profit in the country to have five labs dedicated to pancreatic cancer research. These labs are strategically aligned to dramatically shift the pancreatic cancer research landscape, from diagnosis to treatment to higher survival rates.

6. Together with Stand Up To Cancer, the Foundation established the Pancreatic Cancer Collective, dedicated to improving patient outcomes for pancreatic cancer patients. To date, the Collective has conducted 30 clinical trials led by more than 400 research investigators at 70 institutions. 7. The Foundation has established new grant programs to build on our research momentum. These grants include the Lustgarten Foundation-AACR Career Development Awards for Pancreatic Cancer Research in honor of Supreme Court Justice Ruth Bader Ginsburg and Congressman John Robert Lewis, who both died of pancreatic cancer in 2020. We established two three-year, $300,000 career development awards to address the need for greater gender and racial diversity within the pancreatic cancer research community. The Therapeutics-Focused Research Program fosters collaboration and enables researchers to identify new therapeutic approaches and/or drug targets. The program ensures there is a robust pipeline of potential treatments targeted at four key areas of pancreatic cancer biology. 8. The Foundation is boldly advancing research from the lab to the clinic, a process known as translational research, by conducting clinical trials under the umbrella of the Foundation's Clinical Accelerator Initiative. The CAI is shortening the time from clinical trial concept to launch and allowing researchers to develop new clinical trials based on the best available science employing cutting-edge biomarkers. These smarter clinical trials are generating large volumes of data scientists can use to expedite new treatments.

Lustgarten-funded research is a force for progress in the scientific community, where creative risks yield high rewards in the pursuit of accelerating and expanding treatment options to provide hope and save lives. Lustgarten-funded science has been a driving force in every major advancement in pancreatic cancer research. When the Foundation was established in 1998, public funding for pancreatic cancer was less than 1% of available funding for cancer research. Over 20 years later, our leadership in driving funding to pancreatic cancer research has stimulated the National Cancer Institute to triple its funding to more than $182 million in 2018. The Foundation has committed $24 million to research in 2021 to advance progress toward transforming pancreatic cancer into a curable disease.

Lustgarten-funded advancements include sequencing the pancreatic cancer genome; funding studies around Abraxane, which remains the standard of care for many patients; adding Keytruda, the first FDA-approved immunotherapy for advanced pancreatic cancer patients with a specific mutation, to the growing list of treatment options; developing a personalized medicine model; working to develop CancerSEEK, an early detection blood test; harnessing the body's own immune system to fight the disease; developing a deeper understanding of the molecular biology underlying pancreatic cancer; and establishing five dedicated Pancreatic Cancer Research Laboratories.

These initiatives are leading to major breakthroughs, such as the creation of the organoid (a revolutionary 3D cell culture of a patient's specific tumor), offering hope to patients for dramatically improving their care and prognosis. Researchers are now using the organoid in a clinical trial to analyze the tumor's biology and drug sensitivity and apply this data to determine if organoids can predict the most effective treatment for each patient. If successful, this trial can pave the way for organoids to personalize therapies for metastatic pancreatic cancer patients. Three other clinical studies are exploring the use of vaccines to treat pancreatic cancer and testing a new combination of drugs designed to simultaneously activate the T cells (in immune system cell) and block the inhibitory signals from the pancreatic tumor.

In early detection, there is work being done on a liquid biopsy. From a simple vial of blood, researchers are finding the telltale genetic material that comes from the pancreatic cancer well before symptoms appear. Researchers are also using artificial intelligence to improve the detection of pancreas abnormalities that are currently missed by our present-day technology. Moreover, Lustgarten-funded researchers have developed a Comprehensive Cyst (CompCyst) test, which combines clinical, radiological, genetic and protein marker information to distinguish if pancreatic cysts, which can be common amongst the general population, can develop into pancreatic cancer or remain as benign cysts.

Financials

Marc Lustgarten Pancreatic Cancer Foundation
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Operations

The people, governance practices, and partners that make the organization tick.

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Marc Lustgarten Pancreatic Cancer Foundation

Board of directors
as of 02/08/2022
SOURCE: Self-reported by organization
Board chair

Mr. Andrew Lustgarten

MSG Sports & MSG Entertainment

Term: 2020 -

William Bell

Sheila Mahony

Andrew Lustgarten

James Dolan

Quentin Dolan

Charles Schueler

Charles Dolan

Marcia Lustgarten

Robert Vizza, Ph.D.

Kenneth Goodman, M.D.

Jessica Lustgarten Courtemanche

Adam Silver

Willa Shalit

Jennie Fortunoff

John Cobb

Linda Tantawi

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 11/10/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 11/10/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.