Closer to a Cure
Dear Friends,
Thank you to all those who have responded to our 15th Anniversary campaign. Your gifts and good wishes will take us Closer to a Cure. It has been heartwarming and reaffirming to talk with many of you about your early memories of NETRF and even before that, Caring for Carcinoid. Reaching 15 is a milestone worth celebrating. You do not get there alone. Whether you are a new friend or a long-standing one, we are happy you are a part of our community. Your confidence and participation mean the world to us.
This month, we want to highlight the comments of some of those who have been instrumental in our transformational growth over the 15 years. We are grateful to those who have invested in our mission, through their leadership, gifts, and time, to find treatments and cures for neuroendocrine cancer. See more from our Board members, former staff leaders, and important donors.NETRF has grown to play a major role in the search for cures for NETs. We’ve invested $26 million in research, funded 87 projects on four continents, and made an impact through 175,000 patient education contacts. We’ve achieved a lot. But our work is not done.
If you haven’t participated yet in our 15th Anniversary campaign, there is still time. Please make a gift to NETRF today, during this important year-end effort.
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Help us move Closer to a Cure. All of us at NETRF are grateful for your friendship and consideration.
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Elyse Gellerman
Chief Executive Officer
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Delayed NET Diagnosis is a Worldwide Problem
On November 10, NET Cancer Day focused on the all-too-common experience of delayed diagnosis and misdiagnosis among those with neuroendocrine tumors. INCA, International Neuroendocrine Cancer Alliance, released results of its Survey of Challenges in Access to Diagnostics, Treatments, and Care for NET Patients (SCAN). This global survey of NET patients and healthcare professionals confirmed that almost half of NET patients had neuroendocrine cancer that had spread to other organs at the time of diagnosis. (MORE)
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Did you know Carcinoid Syndrome can affect your heart? Dr. Heidi Connolly of the Mayo Clinic discusses carcinoid heart disease, which can affect 20-50% of people with carcinoid syndrome. Dr. Connolly says it’s possible that this complication may not cause any symptoms for a time, but still be causing damage. Watch this video from NETRF’s recent virtual Patient Education Conference. (MORE)
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New NETWise Podcast Focuses on PNETs
Pancreatic neuroendocrine tumors, PNETs, can be complex and challenging to treat. PNETs can vary from patient to patient and over time. The latest episode of NETWise takes a closer look at PNETs. Learn what we know about PNETs and the many treatments available for these tumors. You will also hear about the unanswered questions and the latest research. (MORE)Plus, NETQuiz #13 on Lung NETs
Lung NETs are often overlooked, less frequently discussed, and more misunderstood than NETs that begin in the pancreas or GI tract. Learn about the different types of lung NETs and their treatment in this episode of the NETWise podcast.
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Is there a better tool to find adrenal NETS?
Dr. David Raffel is testing a new tool to improve diagnosis and treatment planning for adrenal NETs. In his NETRF-funded research at the University of Michigan, Dr. Raffel is studying a new radiotracer for PET scans, called [18F]3F-PHPG. He is going to compare [18F]3F-PHPG to [123I]MIBG and Gallium 68 Dotatate, representing the current standard of care, in 24 patients with pheochromocytoma and paraganglioma. If this new technique is proven effective, it could offer same-day imaging and provide high-resolution images that may be better able to find adrenal NETs. (MORE)
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Give a Unique Gift to NET Research: Your tumor cells
If you are a NET patient who is having surgery, your excess tumor tissue is needed so scientists can grow cell lines for research. NETRF’s tissue donation program needs lung NET tissue, along with pancreatic, intestinal, and liver tumor samples. The more samples collected, the greater the chance for success and creation of diverse NET cell lines.
Scientists create models of tumors when cells multiply in the laboratory. These models are critical to cancer research and can be used to analyze the genetic composition of tumors and test the effects of drugs.
A small donation of tumor cells can have a big impact on NET research. A new NET cell line (link to: ) from an intestinal tissue sample donated through this program, has been created at the Broad Institute.
NETRF partners with Pattern.org(link) to work with patients, collect the tissue, and send it to the lab. There is no cost to patients, physicians, or hospitals to donate tissue. (MORE)
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Blazing a New Trail
for Martha Pagel
Vic Pagel has created an Everlasting Impact Tribute fund to support NETRF research in memory of his wife Martha. Martha O’Donnell Pagel was a State of Oregon Assistant Attorney General, a senior policy advisor to the Governor, and an expert in water policy and law. Martha died from extrapulmonary neuroendocrine small cell cancer in July 2019. The Martha O’Donnell Pagel Fund for Research of Rare Cancers will support research to better understand this extremely rare NET. (MORE)
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If you are looking for a good way to support NETRF and gain a tax advantage, consider a stock gift.
NETRF accepts gifts of stocks or mutual fund shares. If you make a stock gift, you can receive a tax-deduction for the full, fair market value of the stock and not incur any capital gains tax on the stock’s growth in value. Stock gifts can be easily made through an electronic transfer from your brokerage account. Please consult your broker or tax advisor with questions related to your specific tax impact. (MORE)
For stock transfer instructions please contact Susan Payson, Chief Development Officer, susan.payson@netrf.org or at (617) 946-1782
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GivingTuesday
GivingTuesday, a day to support nonprofit organizations, is Tuesday, December 1, 2020. Join NETRF as we honor our NET physicians, researchers and staff for GivingTuesday. Stay tuned for more details.
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| This issue of NETRF's eUpdate has been sponsored in part by:
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