Featured donor profiles
From Education to Experience: How one family’s NET experience led to better educational resources for NET patients and families.
“It was my students’ idea…”
A Champion for NETRF
“In my heart, I don’t ever want anyone to experience what we endured.”
The Petersen Foundation is happy to be associated with the Neuroendocrine Tumor Research Foundation and so proud of its accomplishments. We are particularly impressed by your growth as it relates to the breadth of your research funding and expansion of your annual symposium. Keep up the good work.
Trustees of the Margie and Robert E. Petersen Foundation
I was brought into the NETRF community because of a unique scientific expertise. It has been amazing to interact with other outstanding scientists and clinicians who have made major contributions to our understanding of neuroendocrine tumor biology and have expanded treatment options for patients.
Member, Board of Scientific Advisors
I remember with enormous fondness and admiration, Nancy Lindholm O’Hagen, who founded the Caring for Carcinoid Foundation 15 years ago, known today as NETRF. Nancy set an extraordinary standard that continues to be a hallmark of the organization, for superlative research, collaboration, and results. Her vision and fierce intelligence inspired researchers to augment their career paths to explore carcinoid and neuroendocrine tumors.
“Living in South Africa with NETs and not having access to NET specialist teams has been made easier by NETRF. NETRF helps me keep up with all the latest developments in the world of NETs. Most importantly, living with a condition without an accurate prognosis leaves a window for hope for a cure and NETRF gives me so much hope a cure will be found one day.”
I was drawn in by Nancy Lindholm, her passion and her laser focus. What she was doing seemed different, impactful and could help patients. I’m proudest of the community of researchers that NETRF assembled. We did not just attract them, but we nurtured them so they would stay intellectually curious about NETs.
Former NETRF Executive Director
The therapeutic landscape of NET management looks entirely different now than it did 15 years ago, and only to the great benefit of affected patients & their families. Such advances are not random, however. They are the fruit of the type of thoughtful research that NETRF has been funding and supporting during that time interval.
NETRF Board Member
I am motivated by science and as a NET patient I feel more in control of, and better able to manage my illness because of NETRF. I am reassured to know that new treatments for NETs are coming online because of their direct support. NETRF also has excellent patient education resources. The presentations, videos, and other resource information is excellent, timely, and well organized. NETRF is part of my support system and well worth supporting.
My mother died in 2000 from carcinoid cancer/NET tumors, and at the time, so little was known about the disease, it was like being in the Middle Ages. That spurred my initial involvement with NETRF, but what has kept me involved are the gigantic leaps and strides we’ve made in researching and treating this poorly understood disease. We’ve come a long way, but we still have a long way to go.
I think that this organization has really been responsible for my being able to have a life that's not dominated by having NET cancer. I think that the conferences we’ve been to, maybe about 8 of them, have helped both of us to understand what’s current so that we can get the best treatment, to also talk about good ways to handle the side effects and the difficulties that come with being a NET patient.
Like so many NET patients and their families, Terry and I didn't know what a NET was until my diagnosis in 2010 and the NETRF sponsored patient and caregiver conference we were pointed to by my oncologist made an immediate and profound personal impact and led us to become financial supporters and eventually my service on the board of directors. What I have learned through my involvement and the message I want to share is that there is reason to be hopeful.
Fifteen years ago, how much research was done in NETs? Not much. NETRF has been able to bring so many researchers to this area that would not be working in this field without NETRF grants. You have been building the community of NET researchers. I appreciate all the work NETRF has done.
When my daughter was diagnosed and I was learning about the disease, there was no debate in my mind that NETRF was way ahead. The reason I give annually is that it’s remarkable to see how many grants have been given to scientists. That gives us hope. My most obvious and ambitious wish for the future is a cure. It is important to my family as well as thousands of patients. In the meantime, life expectancy for people with NETs has been extended, often by years. That’s proof we are making progress.
The NET community is a vibrant network of individuals and families affected by neuroendocrine cancer. NETRF works tirelessly to support the community's needs, continually evolving to supply the best information possible. By listening and responding to direct requests for resources, NETRF is genuinely a patient-centered organization that cares deeply for the people it serves.
Former Director of Education
My wife and I became interested in NETRF as a way to move research forward for a disease that is underserved and underfunded. We hope that with increased funding and awareness we can ultimately cure this disease.
BOSA Member Emeritus
I wanted to find a way to honor and support my beautiful sister in her journey and fight with this rare cancer and a way for her not to feel alone in her struggles. I love my sister to pieces and would do anything I could for her. I also wanted to raise awareness, so I started a fundraising bike ride that has been going for over seven years now and I am proud to say that with the generosity of family, friends and strangers we have raised over $10,000! Debbie is the epitome of beauty, strength, and hope.
NETRF Donor and Fundraising Event Organizer for Bikng for Debbie
I was honored to serve as NETRF’s Executive Director for over five truly transformational years, working with our dedicated Board, Scientific Advisors, and “small but mighty” staff. Thanks to them and our generous donors - especially the Petersen Foundation - NETRF dramatically increased funding for research, expanded programming, and forged strong relationships with regional, national and international NET patient groups and medical societies. Congratulations to NETRF on 15 years of supporting patients and driving progress to defeat neuroendocrine cancer.
Former NETRF Executive Director