PLATINUM2023

Neuroendocrine Tumor Research Foundation

aka NETRF   |   Boston, MA   |  www.netrf.org

Mission

The mission of the Neuroendocrine Tumor Research Foundation is to fund research to discover cures and more effective treatments for neuroendocrine cancers. To achieve rapid discovery of cures, the NET Research Foundation directs its donations to fund breakthrough scientific research of neuroendocrine cancers. Since its inception in 2005, the NET Research Foundation has awarded over $36 million in large-scale, multi-year research grants to leading scientists at renowned research institutions. The NET Research Foundation is committed to improving the lives of patients, families, and caregivers affected by neuroendocrine cancer by providing information and educational resources.

Ruling year info

2005

Chief Executive Officer

Elyse Gellerman

Main address

31 St. James Avenue, Suite 365

Boston, MA 02116 USA

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Formerly known as

Caring for Carcinoid Foundation

EIN

20-1945347

NTEE code info

Cancer Research (H30)

Cancer (G30)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

We work to address the lack of funding research on carcinoid, pancreatic, and related neuroendocrine cancers, as well as the lack of educational resources.

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?

Research Grant Program

NETRF is the largest private funder of NET research, with the goal of curing these diseases. Since its inception in 2005, NETRF has awarded over $36 million in large-scale, multi-year research grants to leading scientists at renowned research institutions. NETRF has established itself as the leading and most efficient not-for-profit funder of neuroendocrine cancer research.

Population(s) Served
Adults
Adolescents

NETRF provides the most credible, current, and compassionate patient educational programs. Our resources include:

NETRF’s tremendously successful Neuroendocrine Cancer Guide for Patients and Families, which has been shared freely with thousands of NET patients worldwide.

NETRF's first-of-its-kind NETWise podcast is dedicated to NET education with patient stories and expert guidance to help guide patients and their families through their NET journey.

NETRF proudly hosts patient education conferences throughout the United States and online, including our annual Know Your NETS virtual patient education forum.

NETRF nurtures meaningful connections by linking patients and their caregivers with NET specialists and support groups.

Population(s) Served
Adults
Caregivers

The Neuroendocrine Tumor Research Foundation understands the importance of increasing awareness of neuroendocrine tumors (NETs) and providing support to the members of this community. We raise awareness of NETs through our patient education program, our website, and our social media sites.

Population(s) Served
Adults
Adolescents

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.

Total amount of research funded since 2005

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

Chronically ill people

Related Program

Research Grant Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Total research funding since the organization's founding in 2005.

Number of neuroendocrine cancer patient guides distributed

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

Chronically ill people

Related Program

Patient Education Series

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Patient guides delivered to patients, caregivers, support groups, oncology clinics, physician offices.

Number of research studies funded

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

Chronically ill people

Related Program

Research Grant Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

Number of research studies funded each year - Total since 2005: 87

Number of podcast downloads

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

Chronically ill people

Related Program

Patient Education Series

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Number of downloads of our podcast NETWise

Number of podcast followers on YouTube

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

Chronically ill people

Related Program

Patient Education Series

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Unique monthly NETWise listeners on YouTube

Number of views of educational videos through our NETRF YouTube channel

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

Chronically ill people

Related Program

Patient Education Series

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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 mission of the Neuroendocrine Tumor Research Foundation is to fund research to discover cures and more effective treatments for carcinoid, pancreatic, and related neuroendocrine cancers. We also aim to bring awareness to these uncommon cancers as well as provide educational resources for patients and families.

The NET Research Foundation is committed to funding the most promising research in order to discover cures and more effective treatments for carcinoid, pancreatic, and related neuroendocrine cancers. To date, we have awarded over $36 million in large-scale, multi-year research grants to over 129 leading scientists at renowned research institutions around the world to fund neuroendocrine cancer research.

A Commitment to Peer Review
All research grants and requests are reviewed by our Board of Scientific Advisors, which is comprised of distinguished medical leaders who share a commitment to discovering cures for neuroendocrine cancer. The Board of Scientific Advisors provides scientific direction by offering independent, expert advice. All of its members are pioneers in medical research, published authors in the top peer-reviewed medical journals, and leaders of collaborative research projects at top-ranked universities and institutes. We also regularly reach out to aligned organizations and seek partnerships in order to gain new perspectives and approaches.

An Urgent Imperative
With solid science and peer review at our core, the NET Research Foundation Board is equally committed to driving the process to identify and fund projects that have the most potential. All Board members have a direct connection to neuroendocrine cancer and are committed to finding cures as fast as possible. Rigorous scientific review and timely processes allow us to quickly identify and fund projects that have the most promise. Although strong safeguards are essential, we recognize that we have to take risks in funding research in order to drive progress.

Collaboration to Accelerate Progress
We have a strong commitment to collaboration, which can be seen when we convene a broad cross-section of NET researchers at our yearly NET Research Workshop. We are dedicated to accelerating progress for better treatments and potential cures through partnerships with aligned organizations and private foundations; we reach out to the full research community annually with grants we offer through the American Association for Cancer Research (AACR). We attract the best minds to the field through requests for proposals, international prizes, and Young Investigator Awards.

A Diversified Portfolio
Our research portfolio has expanded to include an aggressive, diversified portfolio of basic and clinical projects. We pursue multiple pathways for identifying promising research. For example, we are currently funding an ambitious immunotherapy initiative through a NET Research Foundation request for proposals process, offering international prizes for critically needed pancreatic and carcinoid cell lines, and collaborating with the AACR to bring new ideas and researchers to the fight for cures.

All research grants and requests are reviewed by our Board of Scientific Advisors, which is comprised of distinguished medical leaders who share a commitment to discovering cures for neuroendocrine cancer. The Board of Scientific Advisors provides scientific direction by offering independent, expert advice. All of its members are pioneers in medical research, published authors in the top peer-reviewed medical journals, and leaders of collaborative research projects at top-ranked universities and institutes. We also regularly reach out to aligned organizations and seek partnerships in order to gain new perspectives and approaches.

Our research portfolio has expanded to include an aggressive, diversified portfolio of basic and clinical projects. We pursue multiple pathways for identifying promising research. However, there are still many research areas to be pursued.

On the forefront of immunotherapy: When CAR T therapy was approved for blood cancer, NETRF recruited the pioneer in that research to study whether it could be effective for neuroendocrine cancer. We have funded a team at the University of Pennsylvania to advance the study of CAR T cell therapy for NETs, which is headed for a clinical trial as early as next year. Thanks to multiple NETRF grants since 2014, this team has moved this technology from bench to bedside. As CAR T-cell therapy has done for those living with blood cancer, NETRF hopes it will be a revolutionary step forward in treatment.

Breakthrough discoveries in tumor biology: NETRF funding has unlocked some of the biggest mysteries of NETs, including what causes some tumors to recur and metastasize, while other tumors remain less aggressive. Led by Ramesh Shivdasani, MD, PhD, with the Dana-Farber Cancer Institute, Harvard Medical School, the investigators identified molecular substances called biomarkers that may help predict the recurrence of non-functional pancreatic neuroendocrine tumors (pNETs). The finding moves us closer to identifying patients with a high risk for metastasis at diagnosis and initial treatment, personalizing follow-up and treatment.

Improving personalized medicine: PRRT, Peptide Receptor Radionuclide Therapy, is an effective treatment for many but not all patients with NETs. NETRF has funded research around the world to study new nuclear particles and combination therapies to improve the effectiveness of PRRT for more patients. NETRF awarded Rodney Hicks, MD, of the University of Melbourne with a 2018 Accelerator Award to test whether tumor cells can be “prepped” to be more receptive to PRRT, using medications such as a PARP inhibitor. This work has led to a landmark clinical trial in Australia that could help guide the future of NET treatments.

Landmark findings in tumor genetics: NETRF funded the first large-scale genome sequencing study of pancreatic neuroendocrine tumors, which discovered mutations in two genes (DAXX and ATRX) not previously associated with cancer. The landmark paper by Nickolas Papadopoulos, PhD, of Johns Hopkins University School of Medicine was published in the preeminent journal Science in 2011 and has since had a tremendous influence on NET research and beyond. This remarkable finding has led to more research funded by NETRF to better understand the function and behavior of DAXX and ATRX genes in neuroendocrine tumors. The long-term objective of this exciting line of inquiry is to develop new therapeutic approaches based on a better understanding of DAXX and ATRX alterations in pancreatic neuroendocrine tumors.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

Neuroendocrine Tumor Research Foundation
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Operations

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

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Connect with nonprofit leaders

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Neuroendocrine Tumor Research Foundation

Board of directors
as of 09/13/2023
SOURCE: Self-reported by organization
Board chair

Todd Gilman

Stephen Kaufer

Stephen Blackwood

Jonathan Soroff

Tony Detre

Joseph Li

Todd Gilman

Josh Mailman

Elyse Gellerman

NETRF

Mark Lewis

Julie Mebane

Laurie Rains

Brendan Foley

Laurie Littlepage

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? Not applicable
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable