Announcing the launch of Breakthroughs Today, Cures Tomorrow, our 20th anniversary campaign!
Our 2024 Annual Report highlights the milestones, momentum, and discoveries shaping the future of treatment and care — paving the way for Breakthroughs Today, Cures Tomorrow.
Nancy Lindholm, diagnosed with metastatic neuroendocrine cancer at 29 years old, establishes Caring for Carcinoid Foundation - now NETRF - with a mission of funding research to identify new treatments and, ultimately, a cure.
NETRF hosts its first research symposium, bringing together the leading scientists in the field. This symposium has grown to be the premier annual international conference for NET scientists, facilitating collaboration and growth of the neuroendocrine research community.
Dr. Nickolas Papadopoulos discovered mutations in the DAXX and ATRX genes in pancreatic neuroendocrine tumors. This is the first time these mutations are implicated in any cancer.
The discovery of the ALT pathway in pancreatic neuroendocrine tumors provides a critical prognostic biomarker, helping identify patients at higher risk of relapse. This insight enables more personalized monitoring and treatment strategies to improve patient outcomes and was deployed to the clinic in 2025.
Nancy Lindholm, diagnosed with metastatic neuroendocrine cancer at 29 years old, establishes Caring for Carcinoid Foundation - now NETRF - with a mission of funding research to identify new treatments and, ultimately, a cure.
Nancy Lindholm, diagnosed with metastatic neuroendocrine cancer at 29 years old, establishes Caring for Carcinoid Foundation - now NETRF - with a mission of funding research to identify new treatments and, ultimately, a cure.
Nancy Lindholm, diagnosed with metastatic neuroendocrine cancer at 29 years old, establishes Caring for Carcinoid Foundation - now NETRF - with a mission of funding research to identify new treatments and, ultimately, a cure.
Nancy Lindholm, diagnosed with metastatic neuroendocrine cancer at 29 years old, establishes Caring for Carcinoid Foundation - now NETRF - with a mission of funding research to identify new treatments and, ultimately, a cure.
Nancy Lindholm, diagnosed with metastatic neuroendocrine cancer at 29 years old, establishes Caring for Carcinoid Foundation - now NETRF - with a mission of funding research to identify new treatments and, ultimately, a cure.
We celebrate our rich history of discoveries and the progress made in 2024.
In a landmark achievement for neuroendocrine tumor (NET) research, the first-ever CAR T-cell immunotherapy trial for NETs, which targets CDH17, is now underway, thanks to nearly a decade of foundational support from NETRF. This innovative therapy emerged from NETRF-funded preclinical research led by Dr. Xianxin Hua at the University of Pennsylvania, supported initially by a 2014 NETRF grant and further propelled by a 2018 Petersen Accelerator Award.
The therapy, CHM 2101, is now in a Phase 1/2 clinical trial led by Chimeric Therapeutics in partnership with leading institutions including the University of Pennsylvania, where NETRF Board of Scientific Advisors member Jennifer Eads, MD leads the trial.
NETRF-supported projects led by Carl Gay, MD, PhD, at MD Anderson Cancer Center have delivered meaningful breakthroughs in understanding and modeling extrapulmonary high-grade neuroendocrine carcinomas (epNECs). This work has set a high bar for research in this area and would not have been possible without the support of the Martha O’Donnell Pagel Fund for Research of Rare Cancers.
Building Models for Rare Tumors
Dr. Gay’s team developed the first systematic workflow at MD Anderson to identify and collect samples from epNEC patients. This effort led to the collection of nearly 100 tumor and blood samples from over 50 patients — an unprecedented resource in this rare field. From these, they created the first-ever mouse models and cell lines for several rare epNEC subtypes, which are now being shared with the global research community. Their analysis revealed strong genetic similarities across tumor types, paving the way for basket trials, four of which have already launched based on this work.
Carl Gay, MD, PhD
Grant Recipient
Targeting Drug-Resistant “Persister” Cells
In a parallel project, Dr. Gay investigated the cause of relapse in epNECs. Using an innovative “Watermelon” fluorescent labeling technique, his lab isolated and studied rare, drug-tolerant persister cells that survive chemotherapy by becoming dormant. These cells were found to express unique surface proteins, which are potential new targets for therapy. His team is now developing antibodies to exploit these vulnerabilities with the goal of preventing relapse and improving patient outcomes.
Thanks to NETRF’s support, Dr. Gay’s research is actively transforming clinical care for some of the rarest and most aggressive neuroendocrine cancers.
In 2024, NETRF awarded $2 million in research funding to 10 investigators advancing innovative approaches to understanding and treating neuroendocrine cancer. These grants, selected through a rigorous peer-review process, support studies in early detection, treatment resistance, novel therapies, and disease progression, amongst other topics. NETRF also funded two additional early-career research awards through collaborations with other organizations. With this latest investment, NETRF’s total research funding has reached almost $40 million across 76 institutions in 17 countries. Six of the awardees are first-time NETRF grantees, reflecting our commitment to expanding and strengthening the global neuroendocrine cancer research community. This critical support, made possible by generous donors, accelerates discovery and shapes a future without neuroendocrine cancer.
The 2024 Margie & Robert E. Petersen Neuroendocrine Tumor Research Symposium, held in October in Boston, brought together 120 researchers from across the U.S. and 11 countries for three days of focused scientific discussion. With sessions covering genomics, tumor biology, therapeutic resistance, and model development, the Symposium was designed to spark collaboration and accelerate progress. From informal poster discussions to structured talks, investigators formed new partnerships, shared resources, and laid the groundwork for future clinical advances. NETRF CEO Elyse Gellerman noted that these efforts have already led to 88 collaborations, 22 clinical projects, and 8 patents, evidence that convening the NET research community has real-world impact.
Highlights included a keynote from Dr. Ramesh Shivdasani, honored for his long-standing service and known for his work on the cellular origins of NETs, as well as powerful patient stories from Elaine Nord and Carrie Camino that emphasized the urgency behind the research. Board President Todd Gilman expressed gratitude to donors whose support makes the Symposium possible: “Every dollar... is making a difference. It’s filling a chair here in the auditorium. It’s advancing some piece of work that will eventually get to the patient.” The event reaffirmed the importance of connection, shared knowledge, and sustained investment in moving the field forward.
Dr. James Bibb
Board of Scientific Advisors Member
“We have reached the moment where work and support are producing important advances at an accelerating pace on multiple fronts. The output of this activity and the product of our donors’ gracious support is nothing short of a completely new vision just coming into focus. For the first time, we are beginning to peer over the horizon. We are seeing, as never before, that it is possible to reach our goals."
For 20 years, NETRF has centered its patient education efforts on a simple but powerful principle: it all starts with the patient voice. By listening deeply to the needs and lived experiences of the neuroendocrine cancer community, we’ve created accessible, empathetic resources that empower patients and caregivers. Over the years, we have educated thousands of patients through our patient education conferences, the NET Guide, NETWise podcasts, NET Knowledge Center web portal, and Thrivership series.
Karen Guy
Patient | Donor
“The Thrivership series has been such a positive influence on my NET journey. When I found out about my cancer I was totally unprepared for dealing with it. The Thrivership series and NETRF’s information were instrumental in guiding me on this journey.”
Matt Skinner
Patient | Donor
“When I was first diagnosed, I took long walks in nature. It was almost to tire myself from thinking too much. When I found the NETWise podcast it was as if I had a friend to walk with me. I was no longer alone.”
In 2024, we were honored to receive support from 1,886 donors who contributed a remarkable $3.1 million to fuel research and patient education. Thank you for standing with us. Together, we are driving discovery, delivering hope, and shaping a future where cures are within reach.
Jake Dawson
Patient | Donor
Why I Give:
“I want to turn my challenging experience with neuroendocrine cancer into something positive and impactful. Together, we can make a difference in the fight against this disease.”
Carrie Camino
Patient | Donor
Why I Give:
“I give for my tomorrow.”
NETRF proudly recognizes our Founders Society members— visionary donors who have contributed annually for 15 years or more. Their unwavering commitment has laid the foundation for the breakthroughs we are achieving today and the cures we are working toward tomorrow. We are profoundly grateful for their enduring partnership in transforming the future of neuroendocrine cancer.
James Beatty
Karen Bopp & Elliott McEntee
Jeanette Concilio
Anne Doyle & James Stock
The Haas Family
Steve & Lisa Kaufer
Ed Peine
Victor Rhodes
Melissa Suman
Philip & Judith Wolf
As we honor two decades of discovery and progress, we are looking ahead to the future. NETRF is launching Breakthroughs Today, Cures Tomorrow— a $25 million campaign to accelerate advances in early detection, innovative therapies, and personalized care.
At NETRF, we fund the bold research in neuroendocrine cancer that no one else will. If we don’t fuel this research, it may never happen. We must continue the momentum toward new treatments and better patient outcomes.
Learn more about our new campaign and how you can be a part of it.
