Neuroendocrine Tumor Research Foundation Celebrates 20 Years of Pioneering Research and $40 Million in Funding
Meta Description: The Neuroendocrine Tumor Research Foundation (NETRF) marks two decades of dedicated research, having awarded nearly $40 million to advance understanding and treatment of neuroendocrine cancers.
This year, the Neuroendocrine Tumor Research Foundation (NETRF) commemorates its 20th anniversary, a milestone built on a foundation of relentless advocacy and groundbreaking research. Established in 2005 as the Caring for Carcinoid Foundation by Nancy Lindholm, the organization has become a critical funding source for neuroendocrine cancers (NETs), a group of rare and often misunderstood diseases.
lindholm’s personal experience fueled the foundation’s creation. diagnosed with metastatic neuroendocrine cancer at just 29 years old, and initially given only months to live, she encountered a landscape of limited research and scarce treatment options. This spurred her to champion change, focusing the foundation’s efforts on identifying new therapies and, ultimately, a cure.
Since its inception,NETRF has awarded nearly $40 million across more then 150 grants,fundamentally reshaping the research landscape for these uncommon cancers. These investments have yielded significant discoveries, including refined classifications of lung neuroendocrine tumor subtypes, the identification of “persister cells” that resist treatment in extrapulmonary neuroendocrine carcinoma, and insights into epigenetic differences contributing to racial disparities in pancreatic neuroendocrine tumors.
A recent article published by The Cancer History Project details the foundation’s journey,highlighting its evolution from the Caring for Carcinoid Foundation to the Neuroendocrine Tumor Research Foundation in 2015. This rebranding signaled a strengthened commitment to research, leading to a period of considerable growth and the development of eight new treatments.
“Over these 20 years, we have created a highly productive global community of neuroendocrine cancer scientists who share resources, collaborate on projects, and train the next generation of researchers,” stated Elyse Gellerman, MHS, chief executive Officer of NETRF. “We have invested almost $40 million to understand tumor biology, support translational research that is resulting in new treatments, and bring hope to patients and their families around the world.”
The foundation’s impact extends beyond funding. A video featuring Carrie Camino, a neuroendocrine cancer survivor and recent addition to the NETRF Board of Directors, showcases the power of resilience and advocacy.You can view the video here: https://www.youtube.com/watch?v=YOUR_VIDEO_ID. Camino, a retired business consultant, brings a wealth of experience and a passionate commitment to patient education and research advancement.
NETRF is also addressing critical issues of equity in cancer care. A recent episode of the “NETWise” podcast, released on November 12, 2025, explored the intersection of NETs and race, highlighting the importance of diversity in clinical trials and the complex factors influencing health outcomes. These factors include genetics, epigenetics, treatment by healthcare professionals, and the physical environment. You can listen to the podcast here: https://www.examplepodcastlink.com/NETWise27.
The Neuroendocrine Tumor Research Foundation’s two decades of dedication are a testament to the power of patient-driven research and collaborative scientific inquiry. The organization’s continued commitment promises a brighter future for individuals affected by these challenging cancers.
The Cancer History Project, a collaborative archive of oncology history, provides further context on NETRF’s contributions and the broader landscape of cancer research.You can learn more about the project here: https://www.cancerhistoryproject.org/.
