Our Story

History

We were founded by a patient, Nancy Lindholm, in 2005 as the Caring for Carcinoid Foundation. When she was diagnosed with metastatic neuroendocrine cancer at 29 years old, doctors gave her only a few months to live.

Founded by a NET patient

Nancy was determined to learn all that she could about her diagnosis, but little was known about neuroendocrine tumors (NETs) at that time. She knew the importance of research for a rare cancer that received little governmental funding or attention from the pharmaceutical industry. Nancy also knew that the more researchers learned about neuroendocrine cancer, the more insight they may have into other forms of cancer as well.

The first board members and scientific advisors

Nancy recruited some of the best scientists in the Boston area to become volunteer Scientific Advisors. She also gathered others with personal or family experience with NETs to form a Board of Directors. Many of these dedicated people continue to serve NETRF today and have been joined by additional Directors and Scientific Advisors from throughout the United States.  

Growth and focus

With her determination and the dedication of those she recruited to her cause, Caring for Carcinoid grew; it funded research at many of the leading cancer research institutions in the United States.  In 2015, Caring for Carcinoid changed its name to the Neuroendocrine Tumor Research Foundation (NETRF) to better represent the mission of funding research to understand NETs, improve treatments, and find cures. 

A new era

 NETRF’s ability to invest in significant research has grown throughout the years. With a major, multi-year gift from The Margie and Robert E. Petersen Foundation in 2015, NETRF established the Accelerator and Investigator Awards, which have been granted to research teams throughout the United States, Europe, and Australia.  NETRF has funded more than $37.6 million in research to expand our knowledge of NETs, so patients diagnosed today have many more options than Nancy Lindholm had in 2005.

In Nancy’s legacy, the passion, purpose, and quest continue today. Informed and inspired staff and volunteers work together to recruit resources, knowledge, and talent to the search for advancements in the treatment of neuroendocrine cancer.

Read our most recent annual report.