INCA Member in Focus: The Neuroendocrine Tumor Research Foundation (NETRF), USA
September 03, 2017|
Every month INCA presents one of its members via an interview with the founders and governance.
This month we are glad to present The Neuroendocrine Tumor Research Foundation (NETRF), USA by interviewing Ron Hollander who is is the Executive Director of the organization.
When was the organization founded and how?
We were founded in 2005 as the Caring for Carcinoid Foundation by Nancy Lindholm, who was diagnosed with neuroendocrine cancer at 29 years old. She lived with her disease for many years, and grew the organization into a leading funder of NET research. To reflect the expanding scope and focus of our work, the Foundation changed its name in 2015 to the Neuroendocrine Tumor Research Foundation
Could you share some highlights of projects and your activity?
NETRF is focused on NET research funding, resulting in tangible advances in basic, translational, and clinical research. To achieve that goal, we work to attract the best researchers, giving hope to patients, and inspiring loyal supporters. In addition to the dozens of dedicated NET researchers we have supported over the years, we are proud to have recruited 11 accomplished researchers from other related fields to join our cause and focus on research to improve treatments and find cures for NETS.
Since 2005, we have awarded more than $18 million in large-scale, multi-year research grants to leading scientists at renowned research institutions in the U.S. and abroad. In 2017 alone, we awarded more than $4 million USD to fund transformative research to expand our understanding of the disease and inform personalized treatment options.
NETRF also champions the empowerment of neuroendocrine cancer patients worldwide through education about their disease and resources for care to improve quality of life through our:
• Free patient education conferences, which are also available internationally as livestream events and online videos.
• Web-based information about NETs.
• Monthly newsletter and social media channels.
The Foundation has also worked closely with INCA over the last year during my tenure as President. NETRF funded a portion of INCA’s unmet needs survey and helped support the joint INCA/ENETs Summit in Barcelona.
How do you see your future role?
NETRF continues to expand its international role. We are actively recruiting grant proposals from all countries in pursuit of our research goals:
• Increasing the quality and quantity of NET research.
• Attracting new researchers to the field.
• Creating NET research models for scientists to use for experiments.
• Adapting other cancer diagnostics to NETs.
• Testing existing therapies for precision medicine.
At the same time, we are committed to keeping the patient community connected to advances in the field, working to understand patient needs, and giving voice to those needs as part of the prioritization of research resources. We are particularly interested in the INCA work to discover unmet needs in research and to work closely with our global colleagues to fill those gaps.