Read about our 2022 research symposium & meet our new CDO
Read about our 2022 research symposium & meet our new CDO
Researchers L-R: Drs. Justin Annes, Dawn Quelle, Talya Dayton, & Maite Calucho

A Sensational Symposium! 


The enthusiasm was palpable as more than 100 NET researchers gathered in Boston last month while another 100+ joined online for the 2022 NETRF Margie & Robert E. Petersen Neuroendocrine Tumor Research Symposium. This was NETRF’s 15th annual Research Symposium. After two years of virtual meetings, we were able to gather in person again while offering researchers around the world the ability to attend online and participate in our first hybrid Symposium. 

NETRF’s Research Symposium brings together leaders in the field of NET research, including our grantees, to share their latest data and discoveries. These scientists represent the cutting edge of NET research. Twenty-six investigators presented their research over two days in five sessions that included: NET Models, Genetics, Tumor Microenvironment & Immunology, Tumor Biology & Rare NETs, and Clinical & Theranostic Studies. The symposium kicked off with a welcome reception that highlighted more than 20 researchers presenting posters of their work. The posters were also viewable online the week ahead of the meeting that encouraged even more engagement and networking.

The exciting work presented illustrated NETRF’s strategic funding of basic and translational research to better understand NET tumor biology, crucial to the development of new treatments. The broad scope of the research included work in pancreatic, intestinal, lung, adrenal and other NETs.  There were significant scientific advances reported at the meeting, and some of the most exciting, included advances in immunotherapy as well as ways to improve on current therapies, such as PRRT, and ways to broaden treatment strategies to enlarge the NET patient population that may benefit from them. Importantly, a number of presentations focused on novel vulnerabilities in NET tumor cells, which could result in new potential targets for treatments. 

Most attendees remarked that the scientific program was one of the best ever and the level of NET investigator engagement both in-person and online was remarkable.  The vast majority of researchers also made new connections, shared reagents and forged new collaborations to advance their work. In addition, a special session introduced the new NET Models Consortium, an international group of investigators we are forming to collectively improve the generation and distribution of NET models. The lack of NET models has represented a major obstacle to the advancement of NET research for 30 years, and going forward we are hopeful that the Consortium will be able to begin addressing many of the challenges present.
You can view all the photos from the symposium here
NETRF researchers and staff were thrilled to gather once again in person last month

Every Dollar Makes a Difference!


NETRF is proud that $.90 of EACH dollar raised goes directly to advancing research and developing patient education resources.
As we near the close of 2022, we hope you will consider making a year-end gift to NETRF to support our ongoing, critical work to build better futures for patients living with NETs.
You make this possible. Through your generosity we fund researchers who are wholly dedicated to discovering therapies and novel treatments for NETs. Without our funding these talented scientists would not be able to pursue their vital research.  
Thanks to our incredible community of supporters, NETRF is the single largest private funder of NET research across the globe.
We need YOUR support to continue this critical work.
It's not too late! Please click the button below to make your year-end gift to NETRF, and please know how truly grateful the entire NETRF community is for your support! 
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Andreas Kjaer

NETRF-funded Research

Focuses on New Biomarker


One of the challenges of treatment for neuroendocrine neoplasms (NENs) is the variation in tumor grade, a measure of how quickly cancer cells grow and divide.  Tumor grade is one of the factors that drives treatment.  Additional risk stratification could be an important tool to guide treatment decisions.

"Noninvasive tools to improve the risk stratification and guide decisions on treatment are warranted," said Andreas Kjaer, MD, PhD, DMSc, professor at Rigshospitalet and University of Copenhagen in Denmark. "In this study, we aimed to assess for the first time whether the urokinase plasminogen activator receptor (uPAR) radiotracer would show accumulation in NENs and if that accumulation would be associated with survival rates."

This novel PET radiotracer is the focus of the NETRF-funded research by Dr. Kjaer and was recently reported to accurately assess the presence of uPAR which correlated with the level of tumor aggressiveness in NENs. According to this research published in the September issue of The Journal of Nuclear Medicine, the detection of the biomarker provides useful information for physicians to provide personalized care for patients with NENs and may also serve as a new  potential target for peptide radionuclide therapy (PRRT). Because the highest levels of uPAR are found in the most aggressive NENs, the potential for uPAR theranostics to treat NEN patients, including those with high grade NENs, looks very promising.     

Eat this, not that!


During this season, many holiday events are centered around food, which can be challenging if you are living with NETs and GI symptoms. Our favorite meals can symbolize tradition, connection, and celebration, but if you are experiencing GI symptoms, this can create heightened stress around eating. Relieving some of the stress around food-centric gatherings can make the holidays more enjoyable. Knowledge is power and as you prepare for your holiday celebrations, take a moment to learn ways to manage GI symptoms by watching GI Troubles, Diarrhea and Diet by Dr. Dave Richards from our 2022 KNOW YOUR NETs Patient Education Conference.

NETWise Episode 22: Navigating the New Normal


In the last episode of NETWise, we talked about a moment of transition – the time right after someone receives a diagnosis of NETs and the feelings of grief that can follow. This episode discusses the next part of the journey - how to navigate the emotions, symptoms, and treatments of NETs while continuing to manage life responsibilities and relationships living with NETs. Episode 22 addresses survivorship and how one starts to navigate their new normal.

Test Your Knowledge:


Now that you've listened to our latest NETWise podcast, test your knowledge and take the LACNETS quiz here

"I'll never stop fighting to honor Sheryl's life."


Jim Jungsten recalls the minute he laid eyes on Sheryl Sorem, he knew.
"She was the one."
Jim and Sheryl shared seven wonderful years together, blending their families, adding to their animal menagerie and traveling the US and the world.
When Sheryl was diagnosed with colon cancer in October of 2020, Jim says she faced it bravely and with her trademark tenacity.
She was ready to fight.
Read more about Jim and Sheryl here and how Jim has devoted himself to raising money for NETRF to honor Sheryl's memory.  

Poetic reflections of a NET journey


Lillian Pearce was first diagnosed with pancreatic neuroendocrine tumors the summer before her senior year of high school.
After successful surgery to remove the tumors, and a year of monthly shots to prevent any tumor regrowth, she is living well and is cancer-free.
A senior at the University of Michigan studying Romance Languages and Literatures and Creative Writing, she is also the managing arts editor for the Michigan Daily.
Lillian wrote a series of poems that described her NET experience and has graciously shared them with NETRF. Read more about Lillian here. 

Susan Harrington is NETRF's new Chief Development Officer 


As a mission-driven philanthropy professional, Susie brings more than 20 years of experience spanning public sector and health care institutions to her role with NETRF.

Throughout her career, Susie has been dedicated to improving access to high quality and compassionate health care, particularly for those who face the greatest inequities. This includes raising critical funds to support patient education and navigation programs, leveraging resources to expand breakthrough scientific research, and promoting diversity, equity, and inclusion in clinical trials. Susie looks forward to working closely with our NETRF community to drive investment to accelerate research, identify better treatment options, and ultimately save lives.
Susie was most recently the director for development at Tufts Medical Center, raising major gifts for multiple oncology and health service lines. You can reach Susie at Susan.Harrington@NETRF.Org.
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NET Research Foundation
31 St. James Avenue, Suite 365
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(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 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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