September 2024

The University of Pennsylvania is now enrolling patients in the new phase 1/2 multi-center clinical trial for CAR T cell therapy, the first to include neuroendocrine cancer patients. This is the culmination of ten years of laboratory research by Dr. Xianxin Hua, funded by NETRF. The trial brings Dr. Hua’s research full circle—from bench to bedside—and has the potential to make what was once impossible, possible. Read more.

The Neuroendocrine Tumor Research Foundation (NETRF), in partnership with the North American Neuroendocrine Tumor Society (NANETS), is proud to announce Victor Santoro Fernandes, PhD, as the recipient of the 2024 NANETS Basic/Translational Science Investigator Award (BTSI). Read more about his research.

Neuroendocrine carcinomas (NECs) are uncommon and aggressive with limited treatment options after the failure of platinum-based therapies. A recently concluded phase II trial investigated the efficacy and safety of two second-line treatments – FOLFIRI and CAPTEM – offering new insights into managing NECs. Read more.

NETRF congratulates Dr. Michael Roehrl on his research progress and recent publication. NETRF’s recent Investigator Award to Michael Roehrl, MD, PhD, MBA, Chief of Pathology at Beth Israel Deaconess Medical Center, has fueled pioneering research into pancreatic neuroendocrine tumors (PanNETs). This cutting-edge study, published in iScience, offers fresh insights that may dramatically improve patient outcomes and therapeutic strategies. Read more here.

NETRF is pleased to announce that Daniel Halperin, MD, one of our distinguished Board of Scientific Advisors members, has been appointed Vice Chair of Clinical Affairs in the Department of Hematology and Medical Oncology at Winship Cancer Institute of Emory University in Atlanta, GA. Read more about Dr. Halperin’s new leadership role here.

Whether or not a patient has access to care is one of the most important factors in how their cancer journey plays out. And when you live in a rural area, that access can be complicated. We often talk about how important it is to seek out specialized care for NENs – but we don’t often talk about how challenging it can be to access that kind of care. In this episode of NETWise from NETRF, we’re going to focus on barriers to care that people in rural areas tend to face.

A thrivership journey has ups and downs. Sometimes it may feel like a rollercoaster. Writing a letter to yourself when you're feeling good can be a powerful tool for managing future difficult days, especially when dealing with neuroendocrine cancer. In this month’s Thrivership Series, we discuss the benefits of doing this, share items that you could include in a letter, and encourage you to create this supportive resource for yourself.

Combining and sequencing therapy for neuroendocrine tumors (NETs) involves using multiple treatment modalities in a strategic manner to maximize the effectiveness of treatment, manage symptoms, and improve outcomes for patients. The choice of therapy and its sequence depends on various factors, including the type, location, grade, and stage of the tumor, as well as the patient's overall health and treatment goals. Watch Combining & Sequencing Novel Therapies with Dr. Xavier Keutgen, Dr. Chih-Yi Liao & Dr. Osman Ahmed from NETRF's 2024 Know Your NETs Virtual Conference to learn more about this topic. 

NETRF’s Director of Patient  Education, Jessica Thomas, LCSW, will be attending the Ninth Annual Bay Area Neuroendocrine Patient Conference, hosted by UCSF and NorCal CarciNET Community on September 28, 2024. NETRF is one of the sponsors of the conference. For registration, click here. If you are attending this program, stop by the NETRF table to learn more about NETRF and  NET Thrivership. Jessica will be facilitating at the Caregiver’s table discussion during lunch.  

Thank you to our NETRF community for organizing events that help advance critical neuroendocrine cancer research. This month, we’re spotlighting a longstanding annual event and an upcoming fundraiser that you can get involved in!

If you are in or near Sacramento, put on your Hawaiian shirt and plan to attend “A Night to Celebrate Sheryl Sorem” on October 19. The special event honors Sheryl’s memory while supporting NETRF. Jim Jungsten started the event in tribute to Sheryl after she passed away from neuroendocrine cancer in 2021. You can register for the event and, if you are not in Sacramento, bid on some amazing travel packages in the online auction, here.

For more than ten years, Vicki Dailey has rallied her community with great success to honor and now remember her beloved sister, Debbie Brickner, who passed away from NETs in 2023. This loyal group gathered again for this year’s Hiking for Debbie event on September 14 to honor Debbie’s legacy and support NETRF’s mission to fund research for neuroendocrine cancer. Vicki’s commitment and everyone’s dedication to this annual event is steadfast. The group has cumulatively raised more than $20,000 for NETRF and we are grateful for this support. Congratulations on another successful weekend of connecting and Hiking for Debbie!

If you would like to host a fundraiser for NETRF, please contact Steve Perna at Steve.Perna@netrf.org. 

Did you know that 37% of Donor Advised Fund (DAF) accounts go unused each year? October 10th marks the first-ever World DAF Day, a new kind of giving day that unites nonprofits, fundraising platforms, and DAF providers for a single day of generosity with DAFs. If you have a DAF or are considering one, now is the perfect time to speak with your financial advisor about making a contribution to NETRF. Your support will advance critical neuroendocrine cancer research and help us make strides toward better treatments and cures. Learn more about how to recommend a gift from your DAF to NETRF here. Let’s get DAF-fy for NETRF!

Great news! Give Freely is now available on your iPhone so all of your mobile shopping can help support the NEUROENDOCRINE TUMOR RESEARCH FOUNDATION!

Give Freely, co-founded by NETRF board member Steve Kaufer, is a mission-driven company that harnesses the collective power of online commerce for charitable good. Give Freely’s coupon finder is a simple and automatic way to support NETRF every time you shop online at no cost to you. 

Just add Give Freely to your Chrome browser or iPhone, and it will automatically find coupons for your online shopping AND donate a percentage of the sale to NETRF. It's a win-win!

NET Research Foundation
31 St. James Avenue
Suite 365
Boston, MA 02116
(617) 946-1780 info@netrf.org

The mission of the Neuroendocrine Tumor Research Foundation is to fund research to discover cures and more effective treatments for neuroendocrine cancer. NETRF is the largest global funder of neuroendocrine research and a preeminent resource for expert patient education and support.



NETRF is a 501(c)(3) organization. All donations are tax-deductible to the extent allowed by law.