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NETRF 2023 Annual Report

Welcome to our 2023 Annual Report

On behalf of the NETRF Board of Directors, Scientific Advisors, staff, patients and their families, and researchers, we thank you for your enduring support of our mission.

Dear Friends,

With every passing year, we witness the increasing impact of NETRF’s research funding. 2023 was no exception. NETRF proudly funded 13 research awards totaling $2.1 million, bringing our lifetime scientific funding to $37.6 million.

Our investment in innovation and pursuit of scientific discovery continues to drive science forward and transform lives. We celebrate the NETRF-funded researchers who received patents for their novel work, moved discoveries from the laboratory to clinical trials, and forged industry partnerships to bring new treatments to patients around the world.

Each milestone achieved is a testament to the collective efforts of our community. Our role is unique—we are the largest global funder of NET research. NETRF is often the only source of funding for scientists who want to dedicate their careers to neuroendocrine cancer research.

Our one-on-one impact is equally vital. In 2023, NETRF provided patient education to a record number of individuals affected by neuroendocrine cancer and their families. The profound connections we establish with families serve as a driving force behind our mission.

This success is not ours alone—it is shared by each scientist, patient, caregiver, and, most importantly, our generous donors. Your gifts fuel our progress and inspires us to reach greater heights. As we look ahead, NETRF is poised for the next level of transformational growth. We hope you will be inspired to help NETRF maintain this momentum as we seek new treatments and cures for neuroendocrine cancer.

Thank you to everyone who supported NETRF in 2023. We are grateful for your generosity and confidence in our work. Together, we can accelerate the pace of discovery and bring hope to countless people affected by neuroendocrine cancer.

With gratitude,

Todd Gilman, President & Elyse Gellerman, CEO

2023 A Year in Review

Click any button below to jump to that section, or simply scroll to read the full Annual Report.

Thirteen New NET Researchers Funded

In 2023, NETRF awarded $2.1 million to thirteen investigators studying the most promising scientific approaches to understanding and treating NETs and NECs. Five researchers are US-based, while the rest represent institutions globally.

The new awardees will focus on basic and translational science, including identifying new biological pathways that may be targeted with drug therapies, researching a novel radiopharmaceutical, and examining the immune landscape to explore potential vaccine therapies.

Read about these exceptional scientists and their projects here.

NETRF's Board of Scientific Advisors Co-Chair, Dr. Chrissie Thirlwell, shares how NETRF is moving the needle forward

“Over the last decade, research funded by NETRF has really progressed in a number of different directions. NETRF has been providing the infrastructure and support to start moving the needle towards better treatment and cures.

One of the biggest things I’ve learned over the years is that neuroendocrine tumors don’t follow the rules that other cancers follow. Neuroendocrine tumors don’t have the mutations or changes in DNA that we use to target with treatments in other types of cancers.

We are focusing and learning more about what makes neuroendocrine tumors develop in the first place. Like all cancers, we need to be able to diagnose these tumors earlier.

NETRF has funded research that looks at DNA, genes and proteins in tumors to reveal a more accurate molecular diagnosis, so you may see a molecularly driven treatment, and that’s a big part of the work that’s ongoing.”

 

20

Clinical Research Projects Including Clinical Trials Since 2006

5

Industry Partnerships or Spin-Off Companies to Bring New Treatments to Patient

100%

of Early-Career Grantees Remain in Research…90% in NET Research*

*since 2017

80

New Collaborations Among Multiple Institutions Driven by NETRF Funding

 

Leading NET Scientists Convene in Boston to Share Latest NETRF-Funded Research Developments

NETRF’s 2023 Margie and Robert E Petersen Neuroendocrine Tumor Research Symposium brought together a hundred of the world’s foremost neuroendocrine cancer scientists in Boston. The 16th annual Symposium showcased the latest advancements in NET research, providing a dynamic platform for grantees to share their groundbreaking work and foster collaborations.

Cutting-Edge Discussions and Pioneering Insights

Throughout the general sessions, the spotlight shone on personalized medicine, enhanced strategies for detecting NETs, and advancements in theranostics and immunotherapy. Twenty-nine researchers discussed their progress, with many expressing gratitude to NETRF for providing pivotal grants that propelled them into the field of NET research.

You can view symposium research posters and researcher interviews here.

Accelerating Research from Bench to Bedside

In November of 2023, NETRF celebrated a significant milestone in cancer therapy: Chimeric Therapeutics, an Australian leader in cell therapy, announced a first-in-human CAR T cell therapy clinical trial for neuroendocrine tumors (NETs) will open in 2024. NETRF supported the early-stage, preclinical research that led to the development of this therapy.  

CAR T (Chimeric Antigen Receptor T-cell) therapy, an immunotherapy that harnesses the body’s own T cells to kill cancer cells, has shown success in treating blood cancers, but its application to solid tumors has been more challenging.

In 2014, NETRF initiated a collaboration with Drs. Xianxin Hua (pictured right), David Metz, and Carl June, and urged them to study CAR T in NETs. NETRF’s financial backing included an initial award in 2014, followed by a Petersen Accelerator Award in 2018. Together, the researchers identified CDH17 as a promising target for CAR T cell therapy against NETs. Read more here. 

Why I Give

Elaine Nord knows what it means to be a young professional just starting out, and how support for career ambitions can truly motivate and encourage a young person.

As a 12-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, she pledged a multi-year commitment to NET research and is funding the work of Dr. Nicolas Alcala, who aims to use next-generation sequencing data to study how the DNA of neuroendocrine tumors and the patient’s immune response interact to determine a patient’s NET molecular subtype and clinical course.

Read more about Elaine’s support for the work of NETRF-funded researcher Nicolas Alcala, here.

“It’s important to me to support early-career NET researchers.”

- Elaine Nord

NETRF places people with NETs and their families at the heart of all our Patient Education programs.

In 2023, we launched the NET Knowledge Center, a significant improvement in delivering vital educational resources. This platform provides a streamlined approach for NET patients and caregivers to find information and engage with the community. 

NETRF’s new Thrivership Series, also launched in 2023, discusses how to live well with NETs and addresses the importance of caring for mental and physical health.

In 2023, we added in-person NET IMPACT conferences to our annual KNOW YOUR NETs virtual conference and other presentations to connect with more patients and caregivers than ever before.

In keeping with our goal of providing education when, where and how patients want to use it, our NET Patient Guide distribution grew by 35% in 2023; we added nine new NETWise podcast episodes and 31 patient education videos on our YouTube channel.

I liked the idea of having NET Cancer “Thrivers” talk about their personal journey and hope that in the future we can have more of these candid conversations.
I loved the tumor board and the two cases! Outstanding! I also loved the short presentations by NET patients! Very poignant!
I’m newly diagnosed and was afraid I wouldn’t understand the information being presented. I was pleased that most of the specialists presented information that was easy to follow and wasn’t too technical.
The feeling of hope I got from this. One stop shopping for the body of knowledge. I feel like I can finally stop scouring the internet obsessively trying to find information on this rare disease.
Topics were interesting, and the presentation was very well organized. I appreciated NET patients input and the recurrent idea that we are not alone.
Thank you @curenets. I just listened NETWise podcast and learned a lot. I love how it’s in plain English
Gracias por traducir.
It was perfect for what I’m going through now, both in recovery from surgery and feeling the emotional weight of people in my life not understanding. This reassured me that what I’m feeling is normal for me, even though to others, I appear to be doing great. Thank you for sharing, Jessica!

Why I Give

Stephanie Hruby was diagnosed with neuroendocrine cancer in 2022.

Like most people, she immediately jumped on Google to try to understand what she was dealing with. She quickly found NETRF, and she’s been utilizing our patient education materials and conferences ever since.

“Asking questions in NETs support groups and watching NET experts online has been of huge value in learning what action steps need to be investigated and what options are out there. The connections I have made through online groups and conferences have gotten me through tough times and continue to be the silver lining in this situation,” she added.

Read more about Stephanie here. 

"NETRF’s resources have been invaluable in helping me understand my options and decide next steps."

- Stephanie Hruby

We are deeply grateful to our incredible donor community. Their unwavering support and generosity have driven research progress, bringing us closer to finding cures and improved treatments for all neuroendocrine cancer patients.

Why I Give

In memory of his late wife, Jim wants to leave the world a better place, especially for neuroendocrine patients.

Read More

Carol DeBacker wanted her legacy to be part of the solution. Her family is making sure that happens.

Read More

“As a physician and neuroendocrine cancer patient, I know that patient education and research are the keys to unlocking the mystery of NETs."

Read More

Thank you to our Giving Society members

FOUNDERS | CHAMPIONS | ADVOCATES

NETRF’s Giving Societies pay tribute to our most dedicated, longstanding donors, who have funded critical research in neuroendocrine cancer intending to find cures and improved treatments for all NET patients.

Financial Responsibility and Transparency

The Neuroendocrine Tumor Research Foundation (NETRF) believes all donors have the right to know how their dollars are spent. Donors are investing in our future. In return, we commit to transparency and accountability.

We want our donors to know that we are allocating their donations responsibly and wisely to achieve a cure as quickly as possible and provide effective resources for patients and families.

A nonprofit 501(c)(3) organization, NETRF posts audited financial statements on this website every year, even though it is not required by the IRS. NETRF has been recognized by external charity rating services for its transparency and financial stewardship.

Thank you for reading the 2023 NETRF Annual Report. To support our work, click here
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