Closer to a Cure

Dear Friends,

We are approaching the end of 2020, a year that has brought profound changes and losses in our lives. COVID was not a word in our vocabulary at the beginning of 2020.

Despite all the stress of this year, we want to take a moment to celebrate Neuroendocrine Tumor Research Foundation’s 15th anniversary. Founded in 2005 as Caring for Carcinoid Foundation, NETRF has grown to play a major role in the search for cures for NETs. We honor all those who have lost their lives to NETS. We are grateful to those who have invested in our mission to find treatments and cures for neuroendocrine cancer, and to support patients and families who are coping with the disease.

We begin our year-end fundraising campaign, Closer to a Cure, with a look back at our history and the recognition that our mission has never been more important. Today, more people are being diagnosed with NETs. Much more research is needed to understand these tumors and maintain the scientific momentum achieved over the past few years.

Learn more about our 15th Anniversary Please make a gift to NETRF during our year-end campaign. Help us move Closer to a Cure. All of us at NETRF are grateful for your friendship and consideration.

Elyse Gellerman
Chief Executive Officer

Conference videos

Thank you to all our speakers and attendees for NETRF’s Virtual Patient and Caregiver Conference on October 10. If you missed the conference, or want to watch a presentation again, you can view the conference videos on NETRF’s YouTube Channel.

"Choosing the Wrong Insurance Can
Kill You?!?"

For many people, it is open enrollment season for their health insurance. It is important for everyone, especially people with neuroendocrine tumors, to choose the best health plan for your needs. NETRF Board member and NorCal CarciNET President Josh Mailman discusses insurance coverage and NETs, in this video from NETRF’s October patient conference.

Changes in Telemedicine Coverage

During the COVID 19 pandemic, there has been increased use and popularity of telemedicine. A virtual physician visit is convenient and safer than a trip to the physician’s office or hospital. Insurance companies and Medicare have covered the costs of these visits.

Now that is changing for some people. As of October 1, UnitedHealthCare and Anthem are changing what they will cover for telemedicine. The changes affect non-COVID virtual visits, but the copays vary by specific plans for employer-sponsored insurance or Medicare Advantage. CIGNA and Aetna have also made some changes in coverage for telemedicine.

The best advice is to check with your insurance company to see if and when you may have copays for virtual visits. Click here to learn more about the rise of telemedicine and making the most of these visits.

NETWise Podcast Focuses on Small Bowel NETs

The small intestine, or small bowel, is one of the most common places NETs form. If you are living with a small bowel NET, this new episode of NETRF’s NETWise podcast is for you. Learn more about how small bowel NETs grow and how they can be treated. You will also hear about new research on small bowel NETs.

Plus, NETQuiz #12 on Clinical Trials

What are clinical trials? Discover how new ideas in NET detection and treatment are moving from the laboratory to the bedside in this NETWise podcast. Learn about the different stages of research and how promising drug compounds progress through them. Then take the LACNETS quiz to test your knowledge.

Earning her stripes

By the time she was 40 years old, Alicia Gutierrez had survived diagnoses of breast cancer and pancreatic neuroendocrine cancer. Through her journey, she has learned to advocate for herself and trust her knowledge and instinct. She calls herself a “pink zebra” and now wants to help others. (MORE)

Get Involved in NET Research: Donate Your Tumor Cells

NETRF’s tissue donation program has resumed, after a pause due to COVID 19. If you are a NET patient who is having surgery, your excess tumor tissue is needed so scientists can grow cell lines for research. There is a need for 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 from an intestinal tissue sample donated through this program, has been created at the Broad Institute.

NETRF partners with Pattern.org 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)

Always in his memory. Inspired to study NETs

Have you ever wondered why a scientist decides to study neuroendocrine tumors? For Pawel Mazur Ph.D., the inspiration is close to home and heart. Dr. Mazur discusses his work and what drives him to discover new ways to fight pancreatic NETs..

Supra-carcinoids: A Newly-identified LungNET Subtype

Most lungNETs are slow growing, but a newly identified subtype, called supra-carcinoids, is much more aggressive. Dr. Lynnette Fernandez-Cuesta and her team discovered these supra-carcinoids and have identified molecular characteristics that distinguish them from other lungNETs. In her current NETRF-funded research, Dr. Fernandez-Cuesta is seeking to understand how these differences contribute to the development of these aggressive tumors and whether they may be exploited to develop therapeutics that can treat these aggressive lungNETs. (MORE)

Faces of Philanthropy:
The Firsty Family

Since 2009, a family has gathered its community to walk, first in support and now in memory of Julie Seltzer Firsty to support a cure for neuroendocrine cancer. In celebration of NETRF’s 15th year, our Faces of Philanthropy series profiles the Firsty family and their longstanding commitment to NETRF and research. (MORE)

Honoring a Son’s Final Wish

The family of Phillip A. Tai Lauria (1987 – 2018) announce the creation of an Everlasting Impact Tribute fund to support NETRF. Phil faced neuroendocrine cancer with fierce determination and almost supernatural strength. Towards the final days of his life, during a conversation with his parents, Phil said “We need to find a cure for this cancer!” Phil and Elaine are honoring Phil by supporting scientific research to improve treatments for neuroendocrine cancer patients. (MORE)

The CARES Act makes it easier to support NETRF in 2020

In 2020, there is temporary legislation designed to encourage gifts to charitable organizations like NETRF. The CARES Act allows taxpayers who do not itemize deductions to make up to $300 of charitable contributions to qualified charities this year. Taxpayers who itemize can the full value of their donations, up to 100% of adjusted gross income. (MORE)

This issue of NETRF's eUpdate has been sponsored in part by:

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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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