2024 KNOW YOUR NETs Virtual Patient Education Conference is July 20, 2024
Registration is now open for our 2024 KNOW YOUR NETs Virtual Patient Education Conference on Saturday, July 20, from 11 am - 4 pm EST. Hope is an action. Learn about hope in action for NETs through:
Innovation, Discovery in Research and Clinical Trials:
• Discovery in NETs through Basic and Translational Research
• Clinical Trials in NETs and Immunotherapy in NETs
• Advances in NETs from the European Perspective
Treatments and Multidisciplinary Care:
• Combining and Sequencing Novel Therapies in NETs
• NET Tumor Board
Living Well with NETs:
• Symptom Management and Nutrition
• Genetics and Fertility
• NET Thrivership and Quality of Life
The day will end with a live Q&A. We are excited to spend this time with you and share hope in action for the future of NETs.
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Thank You, Providence!
On May 4th in Providence, Rhode Island, NETRF hosted a NET Impact, Research, and Thrivership education program. The event was attended by patients, caregivers and families connecting and learning from our NET specialists who shared their time, passion, and expertise. Thank you to our program Co-Chairs Jennifer Chan, MD, MPH, and Pamela Kunz, MD, and our event sponsors Crinetics, Curium, Novartis, TerSera, and Wren Laboratories.
Special thanks to NANETS for their collaboration in producing this event.
All of the NET Impact sessions were recorded and are an everlasting educational resource on NETRF’s YouTube page here.
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Advancing NET Research Through a New Clinically Relevant Mouse Model
One of the main challenges in neuroendocrine tumor (NET) research is the scarcity of models that accurately represent the disease. These models are essential for understanding the origins, progression, and resistance of NETs and testing new therapies. To address this, the Neuroendocrine Tumor Research Foundation (NETRF) has invested significantly in the development of various models, funding 23 grants totaling $5.7 million. These projects range from cell lines and organoids to mouse and zebrafish models. Read more here.
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Lutathera® Approved by FDA as First Medication for Pediatric Patients with Certain NETs
The U.S. Food and Drug Administration approved Lutathera® as the first therapy specifically for patients 12 to 17 years of age who have somatostatin receptor-positive (SSTR+) gastroenteropancreatic neuroendocrine tumors (GEP-NETs), including foregut, midgut, and hindgut neuroendocrine tumors.
This marks the first time the FDA has approved a radiopharmaceutical for adolescents with SSTR-positive GEP-NETs. Read more here.
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Cabozantinib Evokes Response in Some Clinical Trial Participants with Metastatic Pheo/Para
The results of a phase 2 clinical trial, the Natalie Trial, suggest that the drug cabozantinib may hold promise as a therapeutic option for some patients who have unresectable and progressive metastatic pheochromocytomas or paragangliomas (MPPGs). The trial found a 25% response rate from cabozantinib among those with MPPG, recently published in the journal Lancet Oncology.
Pheochromocytoma and paraganglioma (Pheo/Para) are neuroendocrine cancers that arise from cells in the adrenal glands (pheos) or outside of the adrenal glands in cells near nerve bunches called paraganglia (paras). Read more here.
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NANETS/NETRF Research Funding Opportunity
The purpose of the grant is to support early-career scientists in their pursuit of research focused on neuroendocrine tumors. NETRF has supported the BTSI grant since 2016.
For eligibility criteria and instructions on how to apply, click here.
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NETWise Episode 35: Histotripsy
In the past few months, there’s been a lot of buzz in the NET community about histotripsy. This newly approved procedure holds a lot of promise for treating NETs and may prove to be even more exciting in the future. In this episode of NETwise, we’re sharing everything we know about this new treatment: how it works, how it came to be, and what it means for NET patients.
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May is Mental Health Awareness Month
Caring for your body and your mind is critical when managing your neuroendocrine cancer. NETRF's Director of Patient Education, Jessica Thomas, LCSW, shares some advice and strategies for keeping your mental health in check while managing your disease in May's Thrivership Series.
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Kentucky Derby Fundraiser
Practicing physician and NET patient Dr. Elizabeth Zide is no stranger to fundraising for NETRF.
She's run half marathons and completed virtual "canyon hikes" during the pandemic all to raise money for NETRF research.
This year, Elizabeth and her husband Vincent Hosfield welcomed friends and family to don their finest hats and attire at their inaugural Kentucky Derby Fundraiser. It was a fun day of elegance as well as compassion. Elizabeth, Vincent, and their friends contributed more than $3,000 to help advance NETRF research and support patient education programs.
We are grateful to Dr. Zide, her family, and friends for their continued support. To date, Dr. Zide's fundraising events have raised more than $41,000 for NETRF. We'll raise a mint julep to that!
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Attend an Event in Your Community
Below are some upcoming community events happening to support NETRF.
June 15: Katherine’s Light Foundation presents an All-Day Music Festival in memory of Katherine Mueller, Severna Park Taphouse, Severna Park, Maryland. Purchase tickets here: Katherine's Light Foundation.
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.
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Carrie Camino Joins NETRF's Board of Directors
We are thrilled to announce that Carrie Camino joined the NETRF Board of Directors last month.
Carrie is a retired business consultant and partner with West Monroe Partners where she was responsible for relationship management and service delivery for Fortune 100 companies in the life science and insurance industries. She has a deep-seated passion for patient education and advancing NETRF’s research mission.
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Thanks to ITM, Boehringer Ingelheim & Curium for their support of this E-Update.
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