Research Update:
CAR T Cells Suppress NETs Without Damaging Healthy Tissue

Results reported in pre-clinical research

We offer our enthusiastic congratulations to NETRF Awardee Xianxin Hua, MD, PhD, for his recently published paper in the March issue of Nature Cancer. Dr. Hua's work is supported by NETRF's prestigious Petersen Foundation Accelerator Award and his pre-clinical research shows that CDH17 CAR T cells can effectively eliminate NETs without affecting healthy, normal tissues. Read about his work with NETRF here and the press release issued from Penn Medicine News here.

New Clinical Trial: Chemotherapy After Surgery in High-Risk pNETs.

A new phase II clinical trial is exploring the effects of two approved chemotherapy drugs administered after surgery to treat adult patients who have high-risk, well-differentiated pancreatic neuroendocrine tumors (pNETS).

Chemotherapy drugs such as capecitabine and temozolomide work in different ways to stop the growth of tumors by either killing the cells or stopping their proliferation and spread. Giving capecitabine and temozolomide after surgery may prevent or delay the return of cancer in patients with high-risk well-differentiated pNETs. Read more here.

Who is YOUR NET Hero?

Honor your NET provider today!

There's still time to honor your NET care provider! Until May 15th we invite you to celebrate the commitment and care of your NET hero. You can make an online gift in honor of a health care provider who has made a difference in your life. Your donation will go toward funding essential research of improved treatments for neuroendocrine cancer. We’ll notify your provider about your thoughtful donation with a letter of gratitude and a Certificate of Applause. Click here to donate today!

NETRF proudly announces the launch of

the NETRF Legacy Society!

NETRF is pleased to announce the newly created NETRF Legacy Society. The Legacy Society honors individuals who include NETRF in their estate plans by a bequest beneficiary, IRA gift, or other planned gifts. The NETRF team is truly grateful for the foresight and thoughtfulness of donors who take the steps to include a provision for NETRF and NET research in their estate plans. These commitments will have a profound impact on NET research for generations to come and will inspire others to give through a legacy gift.

"We're incredibly grateful to donors who have included NETRF in their estate planning, like NET patient and donor Joe Castrovinci, (see story below). If you have taken steps to include NETRF in your legacy plans, we'd love to acknowlege and honor your commitment to support NET research in the future," said Elyse Gellerman, NETRF CEO.

Membership of the NETRF Legacy Society is extended to those who have made a provision in their will or estate plans for the Neuroendocrine Tumor Research Foundation. These future gifts will sustain ongoing NET research around the globe and provide hope for generations of NET patients and their families. Learn more here.

Meet NETRF Legacy Society Founding Member

Joe Castrovinci

Grateful patient and donor explains why including NETRF in his estate plan was an easy decision

Joe Castrovinci (on left in photo) has been living with NETs (and living well!) since his diagnosis in 2012. Read about his NET journey and why he and his husband Gordon have included NETRF in their estate planning. Read Joe's story here.

Save The Date: July 24th 2022

KNOW YOUR NETs (KYN)

Virtual Patient & Caregiver Conference

On Sunday, July 24th, NETRF will host its 2022 KYN Patient and Caregiver Conference. We've received more than 500 responses to our conference agenda survey and we are busy at work developing presentations with our expert partners from UChicago Medicine and NET specialists across the country. Watch this newsletter for registration details to come in the next issue.

NETWise Podcast: High-grade NETs

While most neuroendocrine tumors are low-grade and slow growing, there are some that are high-grade and very aggressive. These high-grade NETs are treated very differently. In the newest episode of NETWise, we turn the spotlight on high-grade NETs, talk with NET physicians about the treatment challenges, and hear from a patient and caregiver about dealing with the diagnosis. Listen here.

NETs and the Lungs

Sukhmani Padda, MD, presented “Lung Neuroendocrine Tumors” for NETRF’s “Know Your NETs” 2021 virtual conference. Dr. Padda serves as the director of Thoracic Medical Oncology at Cedars-Sinai Cancer Institute. Watch her presentation here.

New 2022 NET Guide for patients & families is on the way!

NETRF’s Patient Guide, launched in 2019, is a valuable resource for patients, family members, and caregivers navigating their own unique NET journey. Over the past three years, NETRF has distributed almost 5000 copies of the guide, which is packed with illustrations, definitions, and fast facts, making it the ideal starting point for anyone looking to take an active role in their care and learn to manage symptoms at home.

With valuable input and insight from physicians, patients, and advocates, we have updated our guide to reflect the most up-to-date information on NETs. The updated guide will feature new infographics, the latest on tests and treatments, links to additional resources, and more! We are excited to announce that the updated version of the Patient Guide will be available in Spring 2022.

Join our team!

NETRF is looking for a Director of Patient Education to join our team. The Director of Patient Education will lead our education program to support the mission and goals of NETRF, a highly specialized and well-regarded foundation focused on research and education for an uncommon cancer. The Director will join a small team in a financially stable and organizationally sound foundation. Read more here.

Special thanks to Advanced Accelerator Applications for sponsoring this April E-update.

DONATE

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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Research Update: CAR T Cells Suppress NETs Without Damaging Healthy Tissue