It's Time to Tell Us What YOU

Want to Learn About NETs

KNOW YOUR NETs Patient Education Conference is July 20th
The voices of neuroendocrine cancer patients and caregivers matter to NETRF. Each year, we ask you to tell us what you want to learn from our annual KNOW YOUR NETs patient education conference. Your input has helped us produce NETRF's most successful NET patient conferences. 

We want to build upon that success, but we need your help. You are the experts on living with neuroendocrine cancer and know what you want and need to learn to help you on your NET journey.

NETRF would like your feedback to plan another successful KNOW YOUR NETs conference. Please take 5 minutes to answer this brief survey.

FDA Paves Way for New Liver Tumor Treatment with Histotripsy

The U.S. Food and Drug Administration recently authorized a new technology called histotripsy to treat tumors in the liver, including neuroendocrine tumors. The noninvasive Edison® system developed by HistoSonics® uses sound waves to destroy liver tumors.

The FDA authorization was based partly on the results from the #HOPE4LIVER clinical trial conducted at 13 sites in the U.S. and Europe. The trial evaluated the efficacy and safety of the Edison system to treat primary or metastatic liver tumors. Read more here


Managing Your Mood  

In February's Thrivership video, NETRF's Director of Patient Education Jessica Thomas shares some mind-body techniques that are beneficial for managing moods, especially in the context of a NET journey.

NETWise Episode 33: The Power of Knowing 

When one is diagnosed with an illness, like NETs, mortality can come to the forefront. Even if your NET journey presents a trajectory of being chronic and stable, it is not uncommon to have thoughts about disease progression and mortality.

There is also a lot of stigma and discomfort in talking about end of life. The complex nature of neuroendocrine cancer and the variability in its progression can make it hard to predict outcomes, adding to the uncertainty and difficulty in discussing the topic. There is also power in knowing more about this journey and especially the available resources for this stage of living. In this episode, we make space to talk about something inevitable: part of living is dying.

When you listen to this episode, pay attention when Josh Mailman mentions “enjoying every sandwich” and finding “what matters most." There is indeed a power in knowing.

2024 NETRF Research Grant Opportunities

NETRF has opened its 2024 grant cycle and invites transformative proposals in basic, translational, and clinical research from the research community to deepen our understanding of neuroendocrine tumors and improve treatments. 

Grant opportunities are available for researchers worldwide with NETRF’s Investigator, Pilot, and Mentored Research Awards. These awards provide one or two years of funding and range from $90,000 to $270,000. The two-step NETRF application process starts with a letter of intent, due by March 18, 2024. Learn more here.

Understanding Survival Factors in Lung NETs: Insights from the California Cancer Registry

In 2019, Claire Mulvey, MD, received a NETRF Mentored Research Award to study the trends in incidence and survival outcomes for lung NETs. The goal was to learn more about who gets lung neuroendocrine tumors (NETs) and why so that researchers and clinicians can better understand how to improve care and reduce disparities for lung NET patients. Read more here.

Making Progress Against Rare Cancers: A Case Study on Neuroendocrine Tumors

A recently published commentary in the journal Cancer describes the NET-PRO study, which is designed to ultimately compare the effects of different treatment approaches for neuroendocrine cancer on patient-reported outcomes. NET-PRO is the largest and most comprehensive observational study of neuroendocrine tumors that has ever been undertaken.  NETRF is proud to be one of the patient advocacy organizations that has helped shape this observational study, run by a team at the University of Iowa and funded by the Patient-Centered Outcomes Research Institute (PCORI).
Read more about the study on our website or check out the commentary here

Leave a Legacy of Hope: Join the NETRF Legacy Society Today

NETRF extends an exclusive invitation to join the Legacy Society. This distinguished community honors individuals who include NETRF in their estate plans, making a lasting impact on NET research. Your commitment provides hope to patients and sustains global NET research. This tax season, in consultation with your accountant or attorney, explore the benefits of the NETRF Legacy Society. Visit our website to discover how your future gift can make a difference. Thank you for your enduring support in advancing NET research.

Community Drives Cures!

Join our dedicated NET community at one or all of these exciting 2024 events to benefit NETRF and help us advance NET research!
Next Month:
March 2: Join Brittany White Holzhauer and the CureNET Project at their Second Annual Winter Dinner Fundraiser at the Hilton Garden Inn, Toledo, Ohio. 

Save the Date!

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.

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. 

NETRF Board Member 

Josh Mailman Appointed to National Cancer Institute Committee

Mailman will serve on a committee focused on increasing representation of diverse and rare cancer populations in clinical trials.
Earlier this month, the National Cancer Institute (NCI) appointed NETRF Board of Directors Treasurer Josh Mailman to serve on its Cancer Care Delivery Research Steering Committee (CCDRSC), whose mission is to review and prioritize cancer care delivery research concepts to be conducted through the NCI Community Oncology Research Program (NCORP) Research Base. 
“It is estimated that 80% of neuroendocrine tumor patients receive their oncology care at the community level and not at academic research institutions. We need to ensure that Clinical Trial design reflects this, especially for the rare disease community. I hope I can provide valuable insight as the committee works towards its goal of testing new models, approaches and/or processes of care delivery to improve quality, outcomes, and access for all patients,” said Mailman. 
The committee membership includes representatives from the NCORP Research Bases, R01 investigators, community oncologists, biostatisticians, patient advocates, and NCI Staff.
Click here to access NETRF's information about finding a clinical trial.

Many thanks to ITM, Boehringer Ingelheim

& Curium for sponsoring 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 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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