NETRF, in partnership with the Education and Research Foundation for Nuclear Medicine and Molecular Imaging (ERF), is pleased to announce that Dr. Frederik Cleeren, of the University of Leuven in Belgium, has been awarded a Nuclear Medicine Pilot Research Grant. Dr. Cleeren will explore developing new radiopharmaceuticals for radionuclide therapy of neuroendocrine tumors. A significant number of patients either do not respond to existing radionuclide therapies or they experience kidney toxicity. Dr. Cleeren’s research and development of new radiopharmaceuticals could increase the therapeutic effect of radionuclide therapy while decreasing kidney toxicity. The goal of the research is to offer patients who have no treatment options left or are not responding to existing radionuclide therapy, a safe and effective treatment alternative. (LEARN MORE)

The American Association for Cancer Research (AACR) recently recognized the NETRF-funded research of Ali Azhdarinia, PhD, of the University of Texas Health Science Center at Houston, at their virtual grant awards event on May 11, 2021. Dr. Azhdarinia is investigating image-guided precision medicine to treat NETs in the gastrointestinal tract and pancreas that are resistant to chemotherapy. Currently, Dr. Azhdarinia has completed developing the drug conjugate and demonstrated that it can specifically bind and enter tumor cells in cell culture to kill them.  “There are two things we hope to accomplish,” Dr. Azhdarinia says. “First, that patients with pancreatic NETs can continue to receive this treatment – in an even safer way, without added toxicity. Second, that patients who have carcinoid tumors can now have this as a new therapeutic option because it can overcome that enzyme-mediated resistance.” (READ MORE)

There wasn’t an empty bike to be found in the studio at Cyclebar Hilltop in Virginia Beach on June 5th. The seats had been sold out for days. Everyone wanted to be a part of Sarah McCallum’s sold-out indoor cycling class. Known as Sass, she’s helped people ‘rock their ride’ for the last two years, serving as a mentor, coach and inspiration to her riders. It’s more than a job to her or a work-out. Sarah likens her classes to group therapy (albeit the kind of therapy where you sweat a lot). Sarah believes mental well-being sets the tone for facing life’s challenges. Her own resolve was tested earlier this year when she was diagnosed with neuroendocrine cancer. (READ MORE)

Help us plan the agenda for our NET Patient and Caregiver Conference that will be held virtually on Sunday, November 7, 2021. Tell us what you would like to learn about NET diagnoses, tests, treatments, symptom management, living with NETs and more. NETRF is committed to listening and following through on what we hear from patients and families. To make your voice heard, please answer a brief 10 question survey. The survey is available through Tuesday, July 5, 2021. (TAKE SURVEY)

Affecting approximately 1 in 3,000 people, pheochromocytomas and paragangliomas are unique tumors in that they can produce excessive amounts of “fight or flight” hormones that can cause over 100 different signs and symptoms. The symptoms can come and go  without warning but if left untreated can cause life-threatening damage. 

In this episode of NETWise, we explain what these tumors are and how they are different from other NETs; the genetic aspects of these tumors; and why it’s so important for pheochromocytoma and paraganglioma patients to be managed by a team of doctors who specialize in these tumors;  (LISTEN NOW)

Then visit the Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS) website to take the LACNETS quiz to test your knowledge of pheos and paras. (TAKE QUIZ)

If you are a NET patient who is having surgery, your excess tumor tissue is needed so scientists can grow cell lines for research. NETRF’s tissue donation program especially needs lungNET and PNET tissue. The more samples collected, the greater the chance for success and creation of diverse NET cell lines.

Scientists create models of tumors when cells multiply in the laboratory. These models are critical to cancer research and can be used to analyze the genetic composition of tumors and test the effects of drugs. A small donation of tumor cells can have a big impact on NET research. A new NET cell line from an intestinal tissue sample donated through this program, has been created at the Broad Institute.

NETRF partners with Pattern.org to work with patients, collect the tissue, and send it to the lab. There is no cost to patients, physicians, or hospitals to donate tissue. (LEARN MORE)

Since its launch in November 2019, nearly 3,600 NET patients, family members and providers in the United States have requested copies of our Neuroendocrine Cancer Guide for Patients and Families in addition to nearly 400 international requests. The 64-page guide is a hands-on reference for the tests, treatments, and management of gastrointestinal, pancreatic, lung, and adrenal neuroendocrine tumors. It offers a solid overview of NETs for the newly diagnosed patient, serves as a helpful reference for longer-term survivors, and gives practical tips on nutrition, diarrhea, and patient/provider communication for those at any stage of the disease. Request your guide now. (ORDER NOW)