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NEW! NETWise Podcast

Managing Symptoms of NETs

Functional and Non-Functional Tumors

This episode is about managing the symptoms of functional NETs. To understand these symptoms, we start by talking about hormones. What role do hormones play in the human body? And what do they have to do with NETs??

We''ll help you understand the differences between functional and non-functional NETs. You''ll also learn why their shared characteristics make it hard to tell them apart.?

A panel of NET specialists discusses ways to manage the many symptoms caused by functional NETs, including:?

Diarrhea
Flushing
Racing heartbeat
Carcinoid crisis
Carcinoid heart disease
Emotional shifts

You'll also hear from two NET patients who talk about their experiences with carcinoid syndrome and carcinoid crisis. This episode will leave you with more information than ever about symptomatic NETs and how to better manage your disease.

Listen Now

About NETWise

NETWise, a podcast about neuroendocrine cancer, is here to help patients and caregivers navigate the world of NETs. Listen in as the NET Research Foundation (NETRF) speaks with experts and patients who will help us to understand NET diagnosis, treatment, and everything in between. NETWise is for everyone, from newly diagnosed patients to longtime survivors as well as caregivers and family members. This is your guide to learning, listening, knowing, and being NETWise.

Supporters

NETRF''s NETWise podcast is made possible through the generous support of the Vincent E. Taylor Patient Education Fund, Lexicon Pharmaceuticals, Advanced Accelerator Applications, a Novartis company, and Ipsen.?

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DONATE

Contact Us

NET Research Foundation
31 St. James Avenue, Suite 365
Boston, MA 02116

(617) 946-1780 | info@netrf.org

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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Dear Friend,

Thank you!!? All of us at NETRF appreciate your thoughtful participation in our #GivingTuesday campaign. NETRF will designate all #GivingTuesday donations to fund a Pilot Research Award.

Results So Far
Collectively YOU and 130 supporters raised $40,000 in a single day and moved NET research forward. It is so powerful to us how a small group of donors can achieve such a generous result!? Our #GivingTuesday updates were sent to over 8,500 people from the NETRF community and over 1,600 opened our first communication.?

A Challenge Remains...
We''d like to challenge those who read our #GivingTuesday''s updates and have not yet participated. Please consider giving a gift to honor NETRF''s 15th Anniversary and joining our #GivingTuesday supporters. What an impact even $15.00 would have on NET Research.?

GIVE NOW

There''s Still Time

NETRF will extend?#GivingTuesday?today so you still have time. We will not send more emails but you can monitor NETRF''s progress on our website. We will announce our results in our December eUpdate newsletter. ?

Heartfelt Gratitude
Many thanks to our 130 #GivingTuesday supporters!? We hope to add more contributions to yesterday''s results and provide more funds to NET research. Please help NETRF and be a part of GivingTuesday!

Sincerely,?
?

Elyse Gellerman
NETRF Chief Executive Officer?

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DONATE

Contact Us

NET Research Foundation
31 St. James Avenue, Suite 365
Boston, MA 02116
(617) 946-1780 | info@netrf.org

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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Dear Friend,

Good morning and Happy Giving Tuesday! We know that you will be flooded with emails from nonprofits all day, so this year we have decided to only send three: this email, one at 2:00 pm, and 8:00 pm EST. Each will have updates to keep you informed on the progress of our goal?- $100,000 to fund a 2021 NETRF Pilot Award!

If you have already made a donation, thank you! We are so grateful for your support today.

Here Is Your 9:00 am Update:?We have already raised $9,005.00! A good start but we have a long way to go.

Scientific discovery starts with an idea

Researchers ask, "What if ."

What if we could develop laboratory models of lung NETs using zebrafish to study in?real time the development of the blood network that supports these tumors?
What if we could use a pancreatic NET mouse model to study the regulation of liver metastasis in pNETs? ?
What if we map the gut microbiome in carcinoid syndrome? Could we find an association between gut microbiomes and those symptoms??

But ideas may go nowhere -?without your help

Unfortunately, exploring new ideas is often impossible for neuroendocrine tumor (NET) researchers. First, there are very few dollars allocated to NET research. Second, many funders (including government agencies) require preliminary results to qualify for research grants. See the problem? Researchers can''t get funding to generate preliminary results.?

That's why the Neuroendocrine Tumor Research Foundation (NETRF) offers a Pilot Research Award - to fund the exploration of ideas with the potential to improve care for NETs. Last year, with the help of kind, generous supporters of NET research, we funded the three pilot projects listed above.

This year on #GivingTuesday your gift will go towards the research of a new innovative pilot project.??

Your gift can bring new ideas to life

Today on #GivingTuesday we hope to raise $100,000 to fund a 2021 Pilot Research Award. Right now, we have promising proposals in hand for new pilot projects. With your support, we can fund the one with the most potential to transform the NET landscape. Because these proposals stand almost no chance of being funded anywhere else, we need your help today.

If your life has been touched by NETs, support research funding now. Your gift says, "Yes, I want to bring promising, breakthrough research in neuroendocrine cancer forward."

GIVE NOW

On #GivingTuesday, ask yourself, "what if."? What if everyone whose life has been touched by neuroendocrine cancer supported research? What if we turned pain into promise? Frustration into progress? Together, we can do so much more. We are counting on your gift to search for a cure.?All of us at NETRF, and the hundreds of thousands of people with neuroendocrine cancer, are grateful for your friendship and consideration.

Sincerely,

Elyse Gellerman
NETRF Chief Executive Officer?

?

DONATE

Contact Us

NET Research Foundation
31 St. James Avenue, Suite 365
Boston, MA 02116
(617) 946-1780 | info@netrf.org

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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31 St. James Avenue, Suite 365
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Dear Friend,

Many thanks to everyone who has made a #GivingTuesday gift!? Every dollar makes a difference and brings us closer to our goal of $100,000 to fund a 2021 NETRF Pilot Award!? Right now, we have promising proposals in hand for new pilot projects. With your support, we can fund the one with the most potential to transform the NET landscape.

Here is your 3:00 pm Update: We have raised nearly $18,000!?
We can''t lose momentum now, remember to share these updates with your community to spread the word!

This year on #GivingTuesday your gift will go towards the research of a new innovative pilot project. ?

GIVE NOW

What is a Pilot Project?
A Pilot project is a one-year $100,000 research award.? NETRF has been funding these types of projects since 2017. These projects usually have one or more goals that describe work requiring one-year to complete. Each pilot has a principal investigator and may work with other collaborators. Pilots are usually a proof-of-concept, feasibility type grant. Last year, with the help of kind, generous supporters of NET research, we funded the three pilot projects listed above.

Pilots Projects currently Underway
Minah Kim, PhD,?Columbia University Medical Center, New York?
https://netrf.org/research/angiopoietin-2-tie2-signaling-regulation-of-liver-metastasis-in-pnets/

Yotam Drier, PhD, Hebrew University of Jerusalem, Jerusalem, Israel
https://netrf.org/research/tumor-xenografts-in-zebrafish-a-new-in-vivo-model-for-lung-carcinoids/

Pilot Projects that are Completed
Justin Annes, MD, PhD,?Stanford University, California
https://netrf.org/research/net-smart-vhemotherapy-a-targeted-prodrug-strategy/

Raj Srirajaskanthan, PhD, Kings College London, United Kingdom
https://netrf.org/research/thin-slice-tissue-technology-study-in-nets/

Today on?#GivingTuesday?we hope to raise?$100,000?to fund a 2021 Pilot Research Award. Because these proposals stand almost no chance of being funded anywhere else, we need your help today.

We are counting on your gift to search for a cure.? On behalf of the over 171,000 NET patients and their families, we thank you for your participation and support.??

Sincerely,

Elyse Gellerman
NETRF Chief Executive Officer?

?

DONATE

Contact Us

NET Research Foundation
31 St. James Avenue, Suite 365
Boston, MA 02116
(617) 946-1780 | info@netrf.org

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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31 St. James Avenue, Suite 365
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Dear Friend,

#GivingTuesday 2020 is entering the final stretch, so please consider your gift now! Help us meet our goal - to raise $100,000 for a 2021 Pilot Research Project.

Here is your 9:00 pm EST Update:? NETRF has received over $35,500!

Our patients and families are our inspiration everyday. Science drives advancements in medicine.

GIVE NOW

Join us in our quest tonight to secure $100,000 to fund a Pilot Research Award that will begin early next year. If NETRF doesn't fund promising research there is almost no other chance of it being funded anywhere else.

On behalf of the over 171,000 NET patients and their families, we thank you for your participation and support.??

Sincerely,?
?

Elyse Gellerman
NETRF Chief Executive Officer?

?

DONATE

Contact Us

NET Research Foundation
31 St. James Avenue, Suite 365
Boston, MA 02116
(617) 946-1780 | info@netrf.org

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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Did you Spark Hope???

Dear Friends,

We all know that 2020 has been a year of great challenges that have tested our resilience. In the midst of all this, our headline for this eUpdate is a celebration of the collective impact of the NETRF community. We are thrilled to announce the completion of NETRF's $10 million Spark Hope campaign!? YOU DID IT-achieving the goal for the most ambitious fundraising campaign in NETRF history!

This has been a tremendous effort and deserves celebration. Nearly 4,000 donors have given $5 million to NETRF since the campaign began in July 2018. Your gifts were so generously matched by a $5 million gift from the Margie and Robert E. Petersen Foundation. Every gift, small and large, was meaningful because it brought us closer to the goal of ensuring NETRF can fund vital, innovative NET research for years to come.?

See the difference $10 million makes.
Click below to hear from researchers, NETRF Board Members, and Scientific Advisors?in this Thank You video.?

On behalf of our Board, staff, scientific advisors, and all those with neuroendocrine cancer, we are grateful for your support and confidence in our work. ???

Thank you so much for SPARKING HOPE!

Elyse Gellerman
Chief Executive Officer?

Simplified Giving with a Donor-Advised Fund?

To make it even easier to give using a donor-advised fund (DAF), NETRF now offers DAF DIRECT, a free and easy-to-use way to start your gift right now, from the NETRF website. You can make a charitable gift to NETRF anywhere or anytime to advance NET research. (MORE)

Improving PRRT for pNETs?

With a new research award, Xavier Keutgen, MD, University of Chicago, will study a subset of pancreatic NETs (pNETs) that respond better to radiotherapy than most pNETs.

"This research project will help me collect data studying the apparent intrinsic radiosensitivity that a subset of pNETs has and apply this knowledge to improve current radiation therapies, including PRRT," said Dr. Keutgen.??

The two-year, $100,000 grant from the North American Neuroendocrine Tumor Society (NANETS), funded by NETRF, will support the search for explanations to the apparent increase in tumor cell death in the subtype.?(MORE)

New PET Tracer Approved by FDA?

A new PET scan tracer, called DetectnetT?(copper Cu 64 dotatate) manufactured by Curium, may help expand access to diagnostic imaging for NET patients. A half-life of 12.5 hours, as opposed to an hour or so for existing options, makes it easier to transport and store. "Our unique production capabilities and distribution network allow us to deliver to any nuclear pharmacy, hospital, or imaging center its full dosing requirements first thing in the morning, to provide scheduling flexibility to the institution and its patients," said Dan Brague, Curium CEO, North America. (MORE)

Saturday, Oct 10
9 AM to 1 PM ET

Register Now for Virtual Conference?

We will take off where most conferences end. Join us as we peel back the curtain to look at the more complicated choices and challenges faced by those living with neuroendocrine cancer. Leading experts on NETs offer an in-depth look at the risks and benefits of advanced treatment options that individuals must consider when making decisions about care planning.? (MORE)

NETWise Podcast Looks at Lung NETs

Initially, symptoms may be dismissed as asthma or allergies. A person may experience a cough that just doesn''t quit or regular wheezing and shortness of breath. Advanced testing, however, sometimes reveals neuroendocrine tumors in the lungs. In this special episode of NETRF''s NETWise podcast, we look at the challenges of diagnosing and treating NETs in the respiratory system. Hear about the latest developments in treatments for this common tumor site. (MORE)

Plus, NETQuiz #11 on Symptom Management

Flushing. Diarrhea. Cramping. Changes in heartbeat, sleep, energy. These are symptoms experienced by those living with #NETCancer. Learn about managing symptoms in NETRF''s NETWise? Podcast.?Then take the LACNETS quiz to test your knowledge.?

Recognizing Carcinoid Syndrome?

Diarrhea. Cramping. Facial flushing. These symptoms can come together as Carcinoid Syndrome, causing significant disruption in daily life. In new information added to NETRF.org, we help you understand the most common and the most serious symptoms of Carcinoid Syndrome.??(MORE)??

Mark Lewis, MD?

NETs & COVID-19

What have we learned about NETS and COVID-19 in the last six months? Scientists are analyzing data about the threats posed by the virus to those living with cancer in real-time. In this videotaped interview, we sit down with NETRF Board Member and Intermountain Healthcare oncologist Mark Lewis, MD, to review the latest facts. Learn about the best ways to protect yourself while settling into a new daily routine.? (MORE)?

#RareCancerDay

On September 30, NETRF will join with other members of the rare disease community to increase awareness about the role of genetic testing in treating cancer. (MORE)

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

?

DONATE

Contact Us

NET Research Foundation
31 St. James Avenue, Suite 365
Boston, MA 02116
(617) 946-1780 | info@netrf.org

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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More Research. More Education. More Impact.

Dear Friends,

?

We hope you are all safe and well. It has been an unprecedented year so far with the coronavirus pandemic and the movement for equality and justice. We are witnessing history and experiencing immense changes in our daily lives. Our collective resilience has been tested.??

In the midst of all this, we want to take a moment to look back and celebrate 2019 - a year of great achievement for NETRF and the NET community. Our 2019 Annual Report looks at scientific milestones and educational innovations. It includes stories about some of the people who have supported us to fund more research projects than ever before and offer new ways to learn about NETs.?

All of us at NETRF are grateful for the generous support from a record number of generous donors in 2019. You make possible our work to serve the NET community. We value every gift, we value your partnership, and we value your feedback. Together, we are dedicated to improving, extending, and saving the lives of those with neuroendocrine cancer.??

While the world faces many challenges in 2020, we know patients and families will continue to struggle with neuroendocrine cancer. Please be assured that NETRF will be there with you and for your families.??

?

In gratitude,

Elyse Gellerman
Chief Executive Officer?

View Annual Report

New Research Grants Awarded

Two new grants have been awarded for NET research through collaborative agreements between NETRF and leading professional organizations.??

New Study to improve PRRT

The FDA-approved PRRT agent ¹⁷⁷Lu-DOTA-TATE (Lutathera?) increases NET patient survival significantly but has a limited objective response rate of 18%. To address this, a new second-generation PRRT agent, ¹⁷⁷Lu-DOTA-JR11, improved the response rate to 45% but presented severe, unexpected side effects.

The Education and Research Foundation for Nuclear Medicine (ERF) has awarded a NETRF-funded grant to address this problem. Susanne Kossatz, PhD, University Hospital at Technical University Munich, will identify the underlying causes of toxicity so that this highly promising treatment may be used safely.

"I cannot stress enough the importance of receiving ERF/NETRF funding for this project," said Dr. Kossatz. "The project deals with a rare disease and is of high risk/high gain nature, which would have made it challenging to receive funding from more traditional funding agencies."

Learn how Dr. Kossatz plans to improve the safety of this novel PRRT treatment. (MORE)

Emergence of high-grade and treatment-resistant pNET subclones?

Well-differentiated pancreatic NETs (pNETs) occur across a broad spectrum with variable degrees of aggressiveness (categorized as tumor grade). Treatment response and overall prognosis are primarily determined by tumor grade. It is unknown when and how high-grade tumors arise in the overall course of the disease and how they change with treatment.

?A grant awarded by the American Association of Cancer Researchers (AACR), and funded by NETRF, will support a study by Etay Ziv, MD, PhD, Sloan Kettering Institute for Cancer Research, NY, to resolve these issues by exploiting recent advances in tumor biology. By tracing the origin of high grade and treatment-resistant tumors, Dr. Ziv''s research will have important consequences regarding the role of tumor debulking, optimal treatment sequencing, and predictive biomarkers. (MORE)

What matters most right now

Patients and Caregivers Share COVID-19 Concerns

Hundreds of NET patients and caregivers responded to a NETRF survey about the impact of COVID-19 on their lives. See what worries NET patients. How has the pandemic affected their cancer care, work, and home life? (MORE)

Coping with Hormone-Producing NETs

In this NETWise podcast, NETRF talks with nine NET specialists and patients to explore the issue of functional vs. non-functional NETS. We discuss the role hormones play in causing common symptoms (like diarrhea and flushing) and what you can do to manage symptoms. (MORE)

Mindfulness Can Ease the Tension of Uncertainty

Living in the moment, instead of ruminating over the past or worrying about the future can help those living with cancer experience greater peace and joy. Learn how paying more attention to your environment is the first step in controlling a wandering, stress-generating mind. (MORE)

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Saturday, June 20, 2020?

Virtual NET Patient Conference

LACNETS, a Los Angeles-based NET patient support organization, is hosting its first-ever Virtual 2020 Los Angeles NET Patient Education Conference on Saturday, June 20, 2020, from 7:30 am to 1:00 pm PDT. The live online event will feature ten NET experts, a live Q&A with speakers, a NETs 101 session for the newly diagnosed, patient stories, and much more! Register today to participate. (MORE)

Virtual Tournament of Games

Friends and loved ones of Phil Lauria (right) gathered virtually to honor the second anniversary of his death with a #BillsMafia (a hashtag for fans of the Buffalo Bills football team) marathon of games. In a virtual marathon of Bills''? games organized by Jeremy Monton (left), Phil''s friends connected, cheered, and reminisced through a Zoom video conference. In the end, the football fest raised $7,000 for NETRF research. (MORE)

The Judith Jones Memorial Fund for NET Research?

The family of Judith Jones (1941-2020), Falmouth, MA, announce the creation of an Everlasting Impact Tribute fund to support the search for a cure to neuroendocrine cancer. Judith (Judy) had an incredible desire to live. She inspired her family and friends with her strength and perseverance. In her memory, her family hopes to help find solutions so others will not have to endure what Judy did. (MORE)

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DONATE

Contact Us

NET Research Foundation
31 St. James Avenue, Suite 365
Boston, MA 02116

(617) 946-1780 | info@netrf.org

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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Last Day to Take the Survey?

Survey Closes on July 28

at Midnight EDT

Last Chance to Take the Survey

"Not Your Average

NET Conference"

What's that?

We know things are different this year. That's why we are taking a unique approach to organizing our upcoming virtual education conference.

Are you ready for something new?

We want you to plan our conference. Yes, you read that right. We are crowdsourcing our agenda.

The NET Research Foundation is committed to listening and following through on what we hear from patients and families.

We have covered all the NET basics before. You can resource that information online, in our video library, in our podcast episodes, or even in our printed guidebook.

We want to go beyond the NET basics to provide more detailed information about NET diagnosis, care, symptom management, and living with NETs at our virtual conference scheduled for?Saturday, October 10, 2020.

Take the Survey Today

Survey available until Tuesday, July 28?

More about this survey: This survey will take less than six minutes to complete. Your participation in this survey is entirely voluntary. You may exit anytime. Your responses will be anonymous. The benefit of participating in this survey is that it will help us to plan our virtual conference agenda.?

?

DONATE

Contact Us

NET Research Foundation
31 St. James Avenue, Suite 365
Boston, MA 02116
(617) 946-1780 | info@netrf.org

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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The New Virtual Exam Room

Your next doctor visit may be virtual. To reduce the spread of COVID-19, many doctors are opting to see patients through video calls or video conferencing. Often called telemedicine or telehealth, the concept of the virtual visit is increasing dramatically to reduce patients'' need to travel or make unnecessary trips outside their home. Learn what these virtual visits are like, and how to prepare, so you can make the most of your time with your doctor.?(MORE)

Footlights to Frontline

Meet Felicia Temple: R&B Singer, NET Survivor, and RN?

Five years ago Felicia Temple was diagnosed with metastatic neuroendocrine cancer. Since then, she realized a lifelong dream with her rising success as a recording artist. When COVID-19 forced her to cancel a world tour, she traded sequins for scrubs. See how and why she went to the frontline as a nurse in a COVID-19 ICU. (MORE)??

Coming Soon

Online Patient and Caregiver Conference

This October, NETRF is hosting a fully online NET patient and caregiver conference. We are teaming up with NET specialists at UChicago Medicine to address your questions and concerns. Mark your calendars and stay tuned for more information.?

Extreme Heat Calls for Extreme Caution

Those in active cancer treatment or survivorship may face an increased risk for heat-related illness during heat waves and high humidity. Learn how to prevent and recognize heat-related illnesses to stay safe this summer. (MORE)

COVID-19 & NETs

Get up to speed on COVID-19 with a?special episode of NETRF''s NETWise podcast,? Who faces the highest risk for serious illness? How can you tell if you are immunocompromised? Then, test your knowledge with this NET Quiz developed by LA-based patient support group LACNETS. (MORE)

Potential Prognostic NET Biomarker Identified in Published Results in NETRF-Funded Study?

A retrospective analysis of neuroendocrine tumor (NET) specimens by Justin Annes, MD, PhD, Stanford University, showed that a novel test for an enzyme secreted by neuroendocrine cells may help predict the course and outcome of neuroendocrine cancers. (MORE)

Investigator Explores Novel Target in Immunotherapy

Steven K Libutti, MD, Rutgers Cancer Institute of New Jersey, is conducting laboratory experiments to characterize the role of an immune regulator called B7x (known to be present in NETs) in stopping T-cells from recognizing and killing pancreatic NET cells that can serve as the basis for the exploration of a new immunotherapy to treat pancreatic NETs. (MORE)

The CARES Act and IRA Distributions

The CARES Act, approved to offer economic relief during COVID-19, temporarily suspends mandatory distributions from IRAs for those older than 70.5 years. See how you can still realize tax benefits by using this method for charitable giving. (MORE)

Charitable Giving Trends

A recently published report evaluates giving trends in the USA for 2019. Individuals, family foundations, and corporations provide essential support for the broad range of charities, like NETRF, in the nonprofit sector. See what types of nonprofits people most commonly support and where experts expect to see changes in giving for 2020. (MORE)

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

?

DONATE

Contact Us

NET Research Foundation
31 St. James Avenue, Suite 365
Boston, MA 02116
(617) 946-1780 | info@netrf.org

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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Accessing the Latest Advancements

There is a way to be among the first to access new NET therapies. You can participate in a clinical trial. Listen to this new NETWise podcast to learn what factors you should consider before agreeing to participate in a study. We talk with NET specialists like Drs. Satya Das, Daniel Halperin, Renuka Iyer, Pam Kunz, Nitya Raj, and Diane Reidy-Lagunes to learn what questions to ask your care team when considering a clinical trial. (MORE)

You Told Us What You Wanted to See in Our Virtual Conference

What are the most pressing concerns of neuroendocrine cancer patients and family members right now? That''s what we asked in an online survey last month. The answers will shape the topics addressed in our upcoming October 10th virtual conference. Mark your calendar and learn what the survey said.?(MORE)

15-Year NET Survivor Offers Advice

Brian Bowe has survived more than stage IV neuroendocrine cancer. He was the Executive Director of the Gilroy Garlic Festival when a gunman killed 3 people and wounded 17 one year ago. He''s made major changes in his life to find improved health and balance. Looking back, he points to one step in his journey that helped him take control of his health-participating in a NET support group. (MORE)??

Coming Soon

Primary Site-Specific Podcasts

Starting next month, we''ll launch a series of NETWise podcasts exploring tumors by primary site. Check out the NET specialists we''re lining up to help us with this deep dive into NETs.?(MORE)

The Term "Carcinoid" Is So 1907

Theodore Roosevelt was president. Oklahoma became a state. And a German pathologist looked into a microscope and described something that looked "cancer-like" as carcinoid. See why many say the term carcinoid cancer should be replaced by neuroendocrine cancer to increase awareness and understanding of this uncommon cancer. (MORE)??

Cancer & COVID-19

On July 17, 2020, the U.S. Centers for Disease Control (CDC) revised the list of medical conditions associated with an increased risk for severe illness from COVID-19 to include cancer. According to the CDC, we don''t yet know what types of cancer or stages of disease are most likely to cause complications. To understand your potential risk for COVID-19 complications, talk to your doctor. (MORE)?

Inherited Risk Factors for NETs

Can the risk for neuroendocrine cancer be passed down from parents to children? Can genetic testing help inform a treatment plan? Who should get genetic testing? Learn about the role of genetics in neuroendocrine tumors and associated syndromes in this 24-minute talk by Lauren Fishbein, MD, PhD, University of Colorado. (MORE)?

Scholarship for those with Rare Diseases

The EveryLife Foundation for Rare Diseases offers the #RAREis Scholarship Fund to enrich the lives of adults living with rare diseases. Apply for a one-time award of $5,000 for the Spring 2021 semester by August 28, 2020, at 3:00 PM CST. (MORE)

Exploring a New Subtype of Lung NETs

A NETRF-funded researcher in France is exploring a lung supra-carcinoid, which has the biological structure of a neuroendocrine tumor with molecular and clinical features of large cell neuroendocrine carcinoma. Dr. Lynnette Fernandez-Cuesta''s work may help us understand the links between low- and high-grade lung neuroendocrine tumors. (MORE)

Remembering Makes a Difference?

NETRF is shining a light on its Everlasting Impact Tribute program, which helps families make a larger impact on NET research with a dynamic program to honor their loved ones. (MORE)

Addressing Equity and Anti-racism

The Neuroendocrine Tumor Research Foundation's (NETRF) mission is to find treatments and ultimately a cure for the thousands of patients living with neuroendocrine cancer. As an organization dedicated to funding research and educating patients, inclusion and equity are essential core values for NETRF. With the attention brought to racial injustice and other forms of inequality at this unique moment in history, NETRF joins others in the cancer community to speak out in support of anti-racism. Read our statement here.

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

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NET Research Foundation
31 St. James Avenue, Suite 365
Boston, MA 02116
(617) 946-1780 | info@netrf.org

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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LAST DAY TO REGISTER

Know Your NETs Virtual Conference

Saturday, October 10
Starts 9:00 AM Eastern

Register Now?

Don''t miss your opportunity to learn from 17 NET experts and specialists.

We have extended the agenda and added a Q&A session.

Your NET questions will be answered, including:

What is next for NET treatment?
What is the life expectancy for those living with NETs?
What is the difference between carcinoid syndrome and serotonin syndrome?
Does a NET diagnosis qualify someone for disability income?
What is watchful "learning" for NETs?
How is COVID-19 affecting the cancer community?
What is the difference between inherited versus tumor genetics?

See the Agenda and Register Today

Submit Your Q&A Questions Early

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Contact Us

NET Research Foundation
31 St. James Avenue, Suite 365
Boston, MA 02116
(617) 946-1780 | info@netrf.org

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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31 St. James Avenue, Suite 365
Boston, MA | 02116 US

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Dear NET Community,

I hope that all of you and your families are safe and well. Our hearts go out to everyone trying to meet the challenges of stay-at-home orders, remote work, homeschooling, and maintaining one''s physical and mental health. We especially recognize the health care providers on the front lines, first responders, and all essential workers serving our needs.

It has been so helpful to connect with many of you by phone or email at a time when all of us may feel isolated. Many of you have asked about our team and we appreciate your concern. We are working from home, staying in touch, and communicating constantly about the informational and educational needs of the NET community. Here are some of the resources we are offering:

NETRF has a COVID-19 landing page where you can find information on:
- Anticipating the ways NET treatment is changing because of COVID-19
- Reducing your risk of exposure
- Understanding your risk for serious illness
- Coping with social distancing
NETRF's podcasts and videos are available on our website.?
We are still sending our patient guide to those who request it. ?
Stay tuned for updates on how you can connect to virtual groups and attend webinars that we are planning.

Some of you have asked me about what happens with research during this international crisis, particularly NETRF-funded projects. Our grantees in the US and throughout the world tell us their projects are paused and labs have been closed to protect the staff. "Mission-critical" work to maintain cell cultures and other animal models continues so these essential resources will not be lost. Some of the researchers can continue their data analysis research activities from home.? Work may be delayed but our grantees are committed to their NET research.

If you have questions or suggestions, please reach out to us. We want to stay in touch.? As we head into the weekend, I hope you can find some peace and renewal.? Please stay safe and well.

Best,

Elyse Gellerman
NETRF Chief Executive Officer?

?

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Contact Us

NET Research Foundation
31 St. James Avenue, Suite 365
Boston, MA 02116

(617) 946-1780 | info@netrf.org

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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Boston, MA | 02116 US

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"Not Your Average

NET Conference"

What's that?

We know things are different this year. That's why we are taking a unique approach to organizing our upcoming virtual education conference.

Are you ready for something new?

We want you to plan our conference. Yes, you read that right. We are crowdsourcing our agenda.

The NET Research Foundation is committed to listening and following through on what we hear from patients and families.

We have covered all the NET basics before. You can resource that information online, in our video library, in our podcast episodes, or even in our printed guidebook.

We want to go beyond the NET basics to provide more detailed information about NET diagnosis, care, symptom management, and living with NETs at our virtual conference scheduled for?Saturday, October 10, 2020.

Take the Survey Today

Survey available until Tuesday, July 28?

More about this survey: This survey will take less than six minutes to complete. Your participation in this survey is entirely voluntary. You may exit anytime. Your responses will be anonymous. The benefit of participating in this survey is that it will help us to plan our virtual conference agenda.?

?

DONATE

Contact Us

NET Research Foundation
31 St. James Avenue, Suite 365
Boston, MA 02116
(617) 946-1780 | info@netrf.org

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.

Manage your preferences | Opt out using TrueRemoveT
Got this as a forward? Sign up to receive our future emails.
View this email online.

31 St. James Avenue, Suite 365
Boston, MA | 02116 US

This email was sent to @.
To continue receiving our emails, add us to your address book.

?

DONATE

Contact Us

NET Research Foundation
31 St. James Avenue, Suite 365
Boston, MA 02116
(617) 946-1780 | info@netrf.org

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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31 St. James Avenue, Suite 365
Boston, MA | 02116 US

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Dear Friends,

Thank you so much for SPARKING HOPE!

Simplified Giving with a Donor-Advised Fund?

Improving PRRT for pNETs?

New PET Tracer Approved by FDA?

Saturday, Oct 10 9 AM to 1 PM ET

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NETWise Podcast Looks at Lung NETs

Plus, NETQuiz #11 on Symptom Management

Recognizing Carcinoid Syndrome?

NETs & COVID-19

#RareCancerDay

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

More Research. More Education. More Impact.

Dear Friends,

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New Research Grants Awarded

What matters most right now

Patients and Caregivers Share COVID-19 Concerns

Coping with Hormone-Producing NETs

Mindfulness Can Ease the Tension of Uncertainty

Saturday, June 20, 2020?

Virtual NET Patient Conference

Virtual Tournament of Games

The Judith Jones Memorial Fund for NET Research?

Last Day to Take the Survey?

"Not Your Average

NET Conference"

The New Virtual Exam Room

Footlights to Frontline

Meet Felicia Temple: R&B Singer, NET Survivor, and RN?

Coming Soon

Extreme Heat Calls for Extreme Caution

COVID-19 & NETs

Potential Prognostic NET Biomarker Identified in Published Results in NETRF-Funded Study?

Investigator Explores Novel Target in Immunotherapy

The CARES Act and IRA Distributions

Charitable Giving Trends

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

Accessing the Latest Advancements

You Told Us What You Wanted to See in Our Virtual Conference

15-Year NET Survivor Offers Advice

Coming Soon

Primary Site-Specific Podcasts

The Term "Carcinoid" Is So 1907

Cancer & COVID-19

Inherited Risk Factors for NETs

Scholarship for those with Rare Diseases

Exploring a New Subtype of Lung NETs

Remembering Makes a Difference?

Addressing Equity and Anti-racism

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

LAST DAY TO REGISTER

Know Your NETs Virtual Conference

Saturday, October 10Starts 9:00 AM Eastern

Register Now?

Submit Your Q&A Questions Early

"Not Your Average

NET Conference"

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Saturday, October 10
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