Imagine being told you have just months to live at the age of 29. That’s the devastating reality Nancy Lindholm faced when she was diagnosed with metastatic neuroendocrine cancer. But instead of succumbing to despair, she channeled her fear into action, igniting a movement that has transformed the landscape of neuroendocrine cancer research. This year marks the 20th anniversary of her brainchild, the Neuroendocrine Tumor Research Foundation (NETRF), a testament to one woman’s unwavering determination to defy the odds.
Founded in 2005 as the Caring for Carcinoid Foundation, NETRF emerged as a beacon of hope in a field plagued by underfunding and neglect. At the time, neuroendocrine tumors (NETs) were shrouded in mystery, with limited research and even fewer treatment options. Lindholm’s diagnosis wasn’t just a personal crisis—it was a call to arms. With a fierce resolve, she rallied a small group of volunteers and researchers to focus on what mattered most: finding new treatments and, ultimately, a cure.
But here’s where it gets controversial: despite being a rare disease, neuroendocrine cancer has long been overlooked by major funding bodies. NETRF stepped into this void, becoming one of the few organizations dedicated to supporting research in this area. Since its inception, the foundation has awarded nearly $40 million across over 150 grants, a staggering figure that has catalyzed groundbreaking discoveries. From identifying distinct subtypes of lung neuroendocrine tumors to uncovering the role of ‘persister cells’ in treatment resistance, NETRF-funded research has reshaped our understanding of this complex disease. And this is the part most people miss: these discoveries aren’t just academic—they’re translating into real-world treatments that are saving lives today.
In 2015, the foundation rebranded as the Neuroendocrine Tumor Research Foundation, signaling a renewed commitment to its research-driven mission. This shift marked the beginning of an era of unprecedented growth, with $40 million raised and eight new treatments emerging from its efforts. As Elyse Gellerman, NETRF’s Chief Executive Officer, aptly puts it, ‘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.’ Their work isn’t just about funding studies—it’s about fostering hope for patients and their families worldwide.
Yet, challenges remain. Take, for instance, the issue of racial disparities in pancreatic neuroendocrine tumors, a topic explored in NETRF’s recent research. Epigenetic differences—changes in gene expression influenced by environment and behavior—play a significant role in these disparities. Is it fair that someone’s zip code or skin color could impact their chances of survival? This is a question that demands not just scientific inquiry, but societal reflection.
NETRF’s impact extends beyond the lab. Through initiatives like the NETWise podcast, the foundation is tackling tough conversations, such as the need for diversity in clinical trials. Episode 27, ‘NETS and Race,’ delves into the four key factors influencing health outcomes: genetics, epigenetics, healthcare treatment, and physical environment. It’s a sobering reminder that science alone can’t solve systemic inequalities—we need to address the broader social determinants of health.
As we celebrate NETRF’s 20th anniversary, it’s impossible not to marvel at how far we’ve come. But the journey is far from over. Carrie Camino, a neuroendocrine cancer thriver and NETRF Board member, encapsulates this spirit with her mantra: ‘Get busy living.’ Her story, documented in a powerful video on The Cancer History Project, is a testament to resilience and the power of community. What’s your take? Do you think enough is being done to address rare cancers like neuroendocrine tumors? Share your thoughts in the comments—let’s keep this conversation going.
For those eager to dive deeper, The Cancer History Project offers a treasure trove of resources, including a timeline, videos, and podcasts. Supported by leading institutions like the American Society of Clinical Oncology and MD Anderson Cancer Center, this collaborative archive is a must-visit for anyone passionate about the history and future of oncology. Subscribe to their podcast on Spotify or Apple Podcasts and join the dialogue—because when it comes to cancer, knowledge truly is power.
