NETRF Hosting Two

In-Person Patient Education Conferences 

NETRF is thrilled to announce two in-person patient education conferences for this Fall.
We invite you to join us on September 23rd in Austin, Texas, for a full day of NETRF educational presentations. You can review the day's agenda here and register to attend here. We are especially excited to welcome United States Congressman and NETs patient Joaquin Castro as our Keynote Speaker. Rep. Castro was diagnosed with NETs a little over a year ago and will share his story. 
And Save The Date for Salt Lake City on November 4th! More details to come for this event. 

NETWise Episode 27: NETs & Race

We hear a lot about the need for diversity and inclusion in health care, and we know there is a need for more diversity in NET clinical trials. Regarding race and medicine, four significant factors influence health outcomes and deserve scientific investigation. First is your genes and your specific ancestry. Second is epigenetics, which is the study of how your behaviors and environment can cause changes that affect the way your genes work. Third is how you are treated by others, especially how you are treated by health care staff, institutions and systems in your setting. Fourth is the physical environment you live in, your family and community. Listen to this  newest NETWise podcast as we take a look at these factors with the experts and talk and learn more about NETs and race.
When you've finished the NETWise podcast, test your knowledge by taking the LACNETS quiz here. 

Thrivership Series: Talking With Your Doctor 

For this month’s Thrivership Series you'll hear from a NET patient about an important topic: how to talk with your doctor. The relationship with your NET specialist and care team is a very personal one. These relationships are built on communication and trust. You must be able to trust, confide in and tell your doctor about your health problems, including all symptoms. Your doctor, in turn, should listen to you, give you options and feedback and have your best interest in mind. Listen to Josh Mailman, MBA, President of NorCal CarciNET and member of the NETRF Board of Directors, present “Talking with Your Doctor," from NETRF's 2023 KNOW YOUR NETs Virtual Conference. 

Finding a NET Specialist & Managing Second Opinions

Knowledge is power and we encourage you to watch Finding a NET Specialist & Managing Second Opinions presented by Heloisa Soares, MD, of the University of Utah from our 2023 KNOW YOUR NETs Patient Education Conference. Dr. Soares discusses things to think about when seeking second opinions for your NET care. She also discusses the importance of the multidisciplinary approach in managing NETs care.

NETRF-Funded Research Leads to Department of Defense Rare Cancers Research Program Grants

Christopher Heaphy, PhD, a cancer biologist and Assistant Professor of Medicine and Pathology and Laboratory Medicine at Boston University School of Medicine and Boston Medical Center, studies telomeres, the protective caps at the ends of our chromosomes. Dr. Heaphy previously discovered that telomeres are altered in pancreatic neuroendocrine tumors (pNETs) with DAXX or ATRX mutations in a process called alternative lengthening of telomeres (ALT). Further, Dr. Heaphy found that the ALT status of a pNET is a prognostic marker of disease progression and could one day be used to identify patients who would benefit from an ALT-specific therapy.

Dr. Heaphy’s research has been supported through two NETRF grants that build upon these earlier discoveries: a 2016 collaborative grant from NETRF and the North American Neuroendocrine Tumor Society (NANETS) and a 2022 NETRF Pilot Award.

Dr. Heaphy’s 2022 NETRF Pilot Award, “Spatial transcriptomic profiling of the PanNET tumor microenvironment," will learn more about the pancreatic NET microenvironment, the ecosystem surrounding the tumor, including the immune and stromal cell populations. Spatial transcriptomics is a newer technology that will allow him and his collaborator, Ruben Dries, PhD, Assistant Professor of Medicine at Boston University School of Medicine, to understand where cells are located spatially within a tissue sample and start to piece together interactions within the tumor microenvironment.

Because of these foundational studies, Dr. Heaphy recently secured additional funding for pNET research and, along with his collaborators, received two Department of Defense Rare Cancers Research Program grants to continue to explore the pNET tumor microenvironment and the underlying molecular mechanisms unique to the ALT pathway that may be exploited as a therapeutic target.

“With our collaborators across different disciplines, we envision the incorporation of spatial and morphological information at the highest resolution with innovative experimental and computational approaches will uncover novel insights into pancreatic NET biology and help identify potential novel druggable targets,” said Dr. Heaphy.

Dr. Iacovos Michael Receives NETRF/NANETS Award

NETRF, in partnership with the North American Neuroendocrine Tumor Society (NANETS), is pleased to announce that Iacovos Michael, PhD, Scientist at Sunnybrook Research Institute and Assistant Professor at the University of Toronto in Toronto, Canada, has been awarded a NANETS Basic/Translational Science Investigator Award (BTSI). This two-year, $100,000 award is designed for early-career scientists to pursue research focused on neuroendocrine tumors (NETs).

With this award, Dr. Michael will study the development of microRNA-based liquid biopsies for small-bowel NETs. Dr. Michael and his collaborators will evaluate the role of a set of microRNAs for diagnosing and monitoring small-bowel NETs. Overall, this research should provide insight into the role of microRNAs as drivers and biomarkers for small-bowel NETs and stimulate additional work in this area.

"NETRF is proud to collaborate with NANETS to support Dr. Michael's research," said Elyse Gellerman, CEO of NETRF. "This project has the potential to help us better understand the progression of NETs and improve diagnosis and treatment to ultimately benefit patients."

Positive Results Reported from Phase 3 CABINET Trial 

Positive results are reported from the Phase 3 CABINET trial evaluating the drug cabozantinib in advanced neuroendocrine tumors. Interim data shows significant improvement in progression-free survival for advanced NETs that progressed on prior systemic therapies.

No new adverse effects were found in the trial beyond cabozantinib's known safety profile. This drug, while FDA-approved for other diseases, has not yet been FDA-approved for NETs. The findings from this trial will be presented at an upcoming medical meeting and further discussed with the FDA. Read the press release here.

In 2018, NETRF funded a pilot project to Dr. Jennifer Chan, the study chair for the CABINET trial, to evaluate data and patient samples from a Phase 2 clinical trial of cabozantinib to look for biomarkers that could predict response.

NETRF is pleased to see progress in the pipeline for new treatments for NETs, particularly those that have progressed on prior treatment.
“Patients with progressive neuroendocrine tumors have limited treatment options. At present, after progression on previous therapies, the treatment path is unclear, underscoring the need for additional options for this disease that is rising in incidence,” said Jennifer Chan, MD, MPH, study chair for the CABINET trial and Clinical Director of the Gastrointestinal Cancer Center and Director of the Program in Carcinoid and Neuroendocrine Tumors at Dana-Farber Cancer Institute. “These promising findings from the CABINET trial, in which cabozantinib showed an efficacy benefit for patients with pancreatic and extra-pancreatic neuroendocrine tumors, are welcome news and show the potential for cabozantinib to address important unmet needs for this community.”

Educating the Next Generation of NET Researchers

As a professional photographer, Elaine Nord has long been inspired to nurture the next generation of budding artists, establishing an internship award to help students pursue their dreams in creative communications.

As an 11-year NET thriver, Elaine wanted to provide the same opportunities to early-career NET researchers. Driven by her deep commitment to education and career development, Elaine is providing multi-year support to sponsor a $100,000 NETRF Mentored Research Award. The two-year award is designed to encourage early-career investigators such as postdoctoral or clinical fellows to pursue neuroendocrine tumor research and make a commitment to the field.

Under the guidance of their scientific mentors, these rising stars bring their energy and determination to advance our quest for better treatments and, ultimately, a cure. The NETRF Mentored Research Award gives these talented researchers the opportunity and means to dedicate themselves to NET research, which benefits the entire NET community.

We thank Elaine Nord for her generosity and dedication to early-career NET scientists through her NETRF Mentored Research Award.

To learn more about sponsoring a NETRF Research Award, contact Susan Harrington at

Party in 'Margaritaville' for NETRF 

Sheryl Sorem, beloved fiance of NETRF donor Jim Jungsten, loved golf, Jimmy Buffet, and a good party.
So, befitting of Sheryl's style, the 2nd annual Sheryl Strong Fundraiser to benefit NETRF is set for Friday, October 20th at the Northridge Country Club in Fair Oaks, California.
Sheryl was diagnosed with Stage 4 colon cancer in October of 2020. After many months of radiation and chemotherapy to shrink her tumors, she underwent successful surgery in July 2021 to remove the cancer.

"We thought we were past the bad times, but about a month after her surgery we got a call from the surgeon; he sent a portion of Sheryl’s tumor to the Mayo Clinic for analysis, and it came back indicating Sheryl had metastatic neuroendocrine cancer," explains Jim.
Sheryl passed away in the summer of 2021.
Jim and Sheryl’s family, along with their extensive network of friends and colleagues, are raising funds for and awareness of NETs through their non-profit Sheryl Strong whose mission is ‘to advocate for those who are in a situation of need or comfort, with little or no hope, those who don’t know their next steps, and those who need someone to be Sheryl Strong.’
If you're in the Sacramento area, please join "Sheryl Strong" for an evening of fabulous food, drink, prizes and, of course, classic Jimmy Buffet tunes for dancing. 
Registration for the fundraiser is here, and you can contact Jim Jungsten for available sponsorship opportunities. 
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NET Research Foundation
31 St. James Avenue, Suite 365
Boston, MA 02116

(617) 946-1780 |
The mission of the Neuroendocrine Tumor Research Foundation is to fund research to discover cures and more effective treatments for carcinoid, pancreatic, and related neuroendocrine cancers.

NETRF is a 501(c)(3) organization. All contributions are tax-deductible to the extent allowed by law. To learn more,
view our Audited Financial Statements and IRS Form 990.
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