To the NETRF Community,
The coronavirus disease (COVID-19) outbreak concerns everyone in the NET community. Issues range from reducing exposure to the disease to getting basic supplies. NETRF encourages patients and families to seek information and guidance from the U.S. Centers for Disease Control, the World Health Organization, as well as regional health authorities.
We hope this information is helpful. Remember your care team is the best source for personalized advice.
Stay safe,
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Elyse Gellerman
NETRF Chief Executive Officer
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Milestone Achievements Announced in NET Cell Line Development
NETRF-funded researchers in Germany, Netherlands, and the United States have achieved progress in the quest to overcome a decades-old obstacle in NET research—the lack of reliable cell lines for laboratory research. Achieving this goal, to establish reliable, widely available cell lines, fills an urgent need and has the potential to increase the speed, volume, and efficiency of the search for therapeutic targets in pre-clinical research. (MORE)
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By Donating NET Tissue, You Can Fuel Cell Line Development
If you have an upcoming surgery, learn how donating tumor tissue can help NETRF and its collaborators develop needed NET cell lines. NETRF is collaborating with Pattern.org to help patients learn how they can donate tumor tissue. Should a patient consent to tumor tissue donation, Pattern.org arranges for excess tumor tissue to be collected at the hospital and shipped to the cell line laboratory. There is no cost to the patient or the healthcare institution. (MORE)
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Early Research on Novel PRRT Agent to Prevent Metastasis
Radionuclide Targets Single Cells
Despite the effectiveness of Peptide Receptor Radionuclide Therapy (PRRT) to prolong the survival of those with neuroendocrine tumors (NETs), many patients will see their cancer spread a few years later. To help discover technology capable of more accurately killing individual neuroendocrine cancer cells, NETRF granted a 2018 Petersen Investigator Award to Roger Schibli, PhD, Paul Scherrer Institut, Zurich Switzerland. His study explored the safety of a novel radionuclide for PRRT to reduce the risk of recurrence. See what he learned. (MORE)
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New Members Welcomed to NETRF Board of Scientific Advisors
The Neuroendocrine Tumor Research Foundation (NETRF) welcomes five new members to its Board of Scientific Advisors (BOSA), a volunteer council of highly distinguished medical and research leaders who share NETRF’s commitment to advancing the understanding, diagnosis, and treatment of neuroendocrine cancer. (MORE)
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New NETWise Podcast Discusses PRRT
This episode of NETRF's NETWise podcast discusses Peptide Receptor Radionuclide Therapy (PRRT) a targeted form of radiotherapy approved in the U.S. in 2018. Listen in as NET experts like Josh Mailman, Drs. George Fisher, Thor Halfdanarson, Ed Wolin, Richard Baum, and others explain what it is, how it works, and who is most likely to benefit from PRRT. This therapy relies on a tumor's expression of somatostatin receptors. We explain what they are and how to know if your tumor has them. Then, we'll take a look at the success rates for this therapy. What does research, like the NETTER-1 study, tell us about outcomes for this form of treatment? To give you information about both the pros and cons of PRRT, we will also discuss the potential side effects, from mild to serious. To give you a sense of what it is like to undergo PRRT, we'll talk with multiple patients about their experiences, as well as the radiation safety precautions patients should take immediately following treatment. Finally, we look to the future asking Drs. Rod Hicks and Tom Hope to explain some of the new therapeutic directions for PRRT.
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Test Your Knowledge
Los Angeles-based patient support group LACNETs is developing NET quizzes based on the content of NETRF's NETWise podcasts. First, listen to NETWise podcast #1: What You Need to Know About NETs. This episode of NETWise takes a deep dive into defining stage, grade, and prognosis of NETs. Experts discuss the signs and symptoms of NETs. Patients reveal their frustration with misdiagnosis. Once you've finished the podcast, take the LACNETs quiz, It's a fun way to learn. (MORE)
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Improving Your Quality of Life
What is palliative care? In this talk by Sandy Tun, MD, University of Chicago, you'll learn about a medical specialty called palliative care that helps patients address the day-to-day challenges of living with NETs. Dr. Tun explains when and how patients can look to palliative care specialists to develop plans to manage pain, nausea, or diarrhea. Watch the video to see how palliative care can help improve a patient's quality of life. (MORE)
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Patient and Family Guide to NETs
Order a free copy of NETRF's helpful 64-page guide to neuroendocrine cancer. Packed with illustrations, definitions, and fast facts, this neuroendocrine cancer guide is the ideal starting point for the person who wants to play an active role in their care and learn to manage their symptoms at home. (MORE)
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Join the Celebration
NETRF turns 15 this year. During our anniversary year, NETRF will be highlighting the people and progress that have contributed to our success and the advancement of the field of NET research. We’ll be noting our accomplishments and celebrating you—the community of donors and participants who have been with us on this amazing journey. (MORE)
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Pumping up for NETs
A group of fitness enthusiasts in the greater Washington, DC, area came together in an energizing way to raise funds for NET research in memory of eGlobalTech founder and CEO, Sonya Jain. This charity Body Pump class was a fun and healthy tribute to a respected leader. (MORE)
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New Team Member
Join NETRF in welcoming Eva May, Development Assistant, as the newest staff member. On the frontline of NETRF’s daily operations, Eva’s contributions support the vital function fueling the funding of groundbreaking research — philanthropy. Welcome, Eva. (MORE)
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