It's Not Too Late to KNOW YOUR NETs!
On July 20th, NETRF hosted our 2024 Virtual Know Your NETs Patient and Caregiver Education Conference. The program incorporated the patient and caregiver voice and featured a theme of hope in action through research, clinical trials, symptom management, and thrivership. It was an empowering and informative patient conference.
Thank you to our 2024 Know Your NETs Co-Chair, Xavier Keutgen, MD, and the neuroendocrine cancer specialists and community members who shared their time, passion, information, and expertise. A special thank you to our event sponsors: UChicago Medicine, Crinetics, Novartis, and RayzeBio.
If you could not attend, you can watch the entire conference on our YouTube Channel by registering here, and you will receive the link in your email to watch.
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NETWise Episode 37: Uncommon Neuroendocrine Neoplasms (NENs)
Neuroendocrine neoplasms (NENs) can arise in many locations throughout the body, grow rapidly, and occur under unique circumstances. In this episode of NETWise, we discuss some of the uncommon locations and situations where NENs arise. Listen here.
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July Thrivership: NETs & NECs
In this month's NET Thrivership Series, we hear from those impacted by neuroendocrine tumors (NETs) and neuroendocrine carcinomas (NECs), including a caregiver perspective. Watch as they share how they thrive, what information they would share with someone newly diagnosed, and what they have learned from their healthcare team.
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Where Does Neuroendocrine Research Happen?
At NETRF, we are dedicated to funding groundbreaking research in neuroendocrine cancer, which includes neuroendocrine tumors (NETs) and neuroendocrine carcinomas (NECs). Over the years, our efforts have extended far and wide, and we are committed to supporting researchers and institutions across the globe in order to fund the best science possible.
Global Reach
In NETRF’s history, our grant funding has spanned four continents and 16 countries, reflecting our global approach to studying this disease. With 71 institutions benefiting from our grants, we are proud to say that our support has had a worldwide impact. Notably, 33 (47%) of these institutions are located outside the United States, collectively receiving 41 awards, accounting for 28% of all grants awarded. This distribution underscores our commitment to tapping into the global potential of scientific research and expertise. Read more here.
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Exploring New Research in Neuroendocrine Cancer Diagnosis and Treatment
In our latest research highlights, we dive into two new research studies funded by NETRF that enhance our understanding of lung neuroendocrine tumors (NETs) and explore targeted therapies for cancer-associated fibroblasts (CAFs) as an innovative approach for neuroendocrine cancers that do not express somatostatin receptors.
Lung Neuroendocrine Tumors: Refining Classification and Prognosis
Lung NETs, which comprise approximately 2% of lung cancer cases, are classified by the World Health Organization (WHO) into different grades and types based on morphology or how the tumor cells look under the microscope. This includes low-grade or typical carcinoids (TCs) and intermediate-grade or atypical carcinoids (ACs). Particularly, ACs pose a significant challenge due to their more aggressive nature and higher propensity for metastasis and relapse within a decade post-surgery. Read more here.
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Thank You for Empowering Progress!
Thanks to your incredible generosity, we surpassed our original goal for the Empowering Progress Campaign! Together with NETRF Board member Steve Kaufer's fantastic match, we raised nearly $120,000 for neuroendocrine cancer research.
This campaign's contributions range from $10 to $15,000, demonstrating that every gift truly matters.
Our remarkable NETRF community always answers the call, and we are beyond grateful for that. Special thanks to Elaine Nord, Jim Rodin, Christine Turner, Dr. Elizabeth Zide, and Tom Burke for sharing their stories for our Empowering Progress Annual Report and Match Campaign.
Thank you for supporting NETRF. Your contributions help fuel critical research, bringing scientific discoveries from bench to bedside -- providing tangible treatment options for patients living with neuroendocrine cancer. Thank you for investing in a brighter, healthier future.
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Katherine's Light Foundation Shines for Neuroendocrine Cancer Research
We are so grateful to the Katherine's Light Foundation (KLF) for their incredible donation of more than $29,000 to NETRF! Along with their amazing community, they have raised an impressive lifetime total of $200,000 for the Katherine Mueller NET Research Fund at NETRF and will sponsor a 2024 NETRF Research Award.
Katherine was a bright light, and we thank her family and friends for championing her legacy to advance neuroendocrine cancer research. Pictured left-right: Katherine's stepfather, Larry Sells, co-founder of KLF; NETRF Board member Suzanne Ludlow; Katherine's husband, Matt Mueller, director of KLF; and one of her best friends, Amanda Shields, director of KLF.
Katherine's Light Foundation is a remarkable example of the power of community fundraising!
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Attend an Event in Your Community
We thank our NETRF community for hosting events in support of research. Below is a list of upcoming fundraisers across the country.
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.
November 10, 2024, World NET Cancer Day: NEC patient Bill Thach runs an ultramarathon to raise money for NETRF. Read his incredible story of resilience and determination here.
We will share more details and registration links about these upcoming events on our social channels and in upcoming E-Updates.
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Give Freely Supports NETRF!
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, and it will automatically find coupons for your online shopping AND donate a percentage of the sale to NETRF. It's a win-win!
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Special thanks to ITM, Boehringer Ingelheim & Curium for supporting this E-Update.
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