Inside: We've updated our Young Adults & NETs NETWise podcast
Inside: We've updated our Young Adults & NETs NETWise podcast
providence patient conference

There's Still Time to Register!

NETRF is bringing our NET Impact Patient Education Program to Providence, Rhode Island, on Saturday, May 4, 2024.
This afternoon event is brimming with expert presentations from Dana-Farber Cancer Institute's Drs. Jennifer Chan, Thomas Clancy, Heather Jacene and Kim Perez, as well as Dr. Thor Halfdanarson from Mayo Clinic, Dr. Pamela Kunz from Yale School of Medicine and Drs. Hussein Assi and Christopher Heaphy from Boston University School of Medicine.
Co-chaired by Drs. Chan and Kunz, discussion topics include NET symptom management, what's new in PRRT, NET clinical trials and much more. See the full agenda here.
We look forward to seeing you next month in the "Ocean State!"

NETWise Episode 34: Young Adults & NETs - an Update

In this updated episode of NETWise, we talk about the experiences of young people living with NETs. This episode originally aired in 2020.
These patients face specific challenges unique to their age and need particular kinds of help navigating the NET journey. This group of patients is often called “AYA,” which stands for Adolescents and Young Adults. For this episode, we’re going to concentrate on the “YA” part of AYA – those who are grappling with a cancer diagnosis as college students or young professionals. Listen here. 

April Thrivership: Making Changes

Making changes can feel overwhelming for anyone, especially in the face of NETs. Small changes can make big differences, particularly when it comes to fostering resilience and practicing emotional wellness strategies and tools. In this month’s Thrivership Series, NETRF’s Director of Patient Education, Jessica Thomas, discusses strategies and resources to help make changes.

NET Clinical Trial Finder

It's been a year since we announced the NET Clinical Trial Finder, an online tool for finding clinical trials for NETs. This search engine was developed and funded by Ancora.Ai and NorCal CarciNet. 
NETRF is proud to promote this tool and is pleased that 36% of all those looking for NET trials have accessed the NET Trial Finder through our website.  
It's free to use, saves your personalized trial searches and results, sets automatic updates, connects to trials, tracks your progress toward enrollment and NEVER shares your data.
Check it out here.

Retreatment Efficacy of

177Lu-DOTATATE: A U.S. Center's Finding

Recent advancements have broadened the spectrum of treatments for advanced NETs, encompassing a range of therapies that include peptide receptor radionuclide therapy (PRRT) with 177Lu-DOTATATE. The approval of 177Lu-DOTATATE after the NETTER-1 clinical trial marked a significant milestone, offering new hope for patients with advanced NETs. By improving progression-free survival (PFS), this therapy has become a critical component of the treatment regimen for many somatostatin receptor-positive NETs.

However, for many advanced NETs, disease progression is an ongoing challenge that requires further exploration of treatment options, including the possibility of PRRT retreatment. A recent study from the Excel Diagnostics and Nuclear Oncology Center in Houston, Texas, sheds light on the real-world effectiveness and safety of 177Lu-DOTATATE retreatment for progressive NETs in the United States. Read more here.

NETRF's Commitment to Excellence in Research Funding

At NETRF, our mission is to fund research that holds promise for advancing the understanding and treatment of neuroendocrine neoplasms (NENs). This is a commitment we do not take lightly: we understand that behind every research project we fund, there are individuals and families hoping for breakthroughs. Our dedication to transparency, integrity, and excellence drives our research grant review and approval process, a cornerstone of our efforts to ensure that we support the most impactful science. Here, we offer an inside look at each grant proposal's rigorous journey before funding is awarded. Read more here

Shared Multi-Omic Data for Advancing Neuroendocrine Neoplasm Research

NETRF-funded researchers have recently reported in the journal GigaScience the first multi-omic dataset of patient-derived tumor organoids of neuroendocrine neoplasms. This includes large cell neuroendocrine carcinomas, lung neuroendocrine tumors (NETs), and small intestinal NETs. This study is a testament to the power of collaboration, including NETRF-funded researchers across the globe: Nicolas Alcala, PhD, Lynnette Fernandez-Cuesta, PhD, Matthieu Foll, PhD, Talya Dayton, PhD, and Hans Clevers, MD, PhD. The dataset offers a comprehensive resource for the research community, which may expedite the search for new neuroendocrine cancer treatments and cures. Read more here.

We are overwhelmed with gratitude for your generous donations and the exceptional match gifts from Dr. Mark Lewis, his family, and an anonymous donor. You helped us raise nearly $45,000 for patient education!

And a very special thank you to Nancy, Stephanie, John, Arlesia and Jan for graciously sharing their stories for the Thrivership Campaign. All proceeds will benefit our patient education programs, including our NETWise podcast series, our patient guide, patient conferences, our 1:1 support, and our Thrivership Series.

Thank you!

Attend an Event in Your Community

Below are some community events happening to support NETRF. 
May 4: Kentucky Derby Fundraiser hosted by Dr. Elizabeth Zide in Detroit, Michigan.

June 15: Katherine’s Light Foundation presents an All-Day Music Festival in memory of Katherine Mueller, Noon to 8 pm, Severna Park Taphouse, Severna Park, Maryland. Purchase tickets here: Katherine's Light Foundation

June 21: The Queenan family hosts a golf tournament in memory of Carolyn Queenan at the Hyannis Golf Club, Hyannis, Massachusetts.

September 20: Moonlight Walk in memory of Julie Seltzer-Firsty in Palo Alto, California.

October 19: Sheryl Strong Fundraiser at the Northridge Country Club, Fair Oaks, California, hosted by Jim Jungsten.

We will share more details and registration links about these upcoming events on our social channels and in upcoming E-Updates.

Give Freely Supports NETRF!

When you add Give Freely to your Chrome browser, it automatically finds coupons for your online shopping AND donates a percentage of the sale to NETRF.
Co-founded by NETRF Board of Directors member Steve Kaufer, Give Freely is a mission-driven company incorporated to harness the collective power of online commerce for charitable good. Give Freely’s coupon finder is a simple and automatic way for you to support your favorite charity every time you shop online, at no cost to you. 

Thanks to ITM, Boehringer Ingelheim & Curium for their support of this E-Update. 

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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 neuroendocrine cancers. NETRF is the largest private global funder of neuroendocrine research and the preeminent resource for expert patient education and support.

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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