Fundraising events are a thoughtful and meaningful way to gather a community around a family who is dealing with a NET diagnosis. The power of support and connectedness can strengthen hope and relay the feelings that neighbors and friends are actively ‘doing something,’ to help a patient and family during a difficult time in their lives while raising funds for a worthy cause. Events take some planning, a core group of committed volunteers, and the inspiration to partner with community members and make a difference!

Whether a walkathon, bike ride, or golf tournament, NETRF has been fortunate to benefit from many events. We enjoy connecting with patients, families, and friends from around the country to lend a hand to support these wonderful activities.

“I went to the NETRF webpage and it had all the info on how to start a fundraiser. It had a form for my website and a section on how to post to Facebook. I was able to get donations from that,” said Vicki Dailey who organized a 82-mile bike ride to recognize her sister.

The staff at NETRF would like to hear about your event ideas. We are ready to answer questions and brainstorm on how to make your event a reality. We would be happy to promote your event on our website with a calendar listing and also a fundraising page.

To help promote your effort, we can supply materials such as bracelets, pens, bags, and collateral materials for your event. If you have an interest in organizing an event to benefit NETRF, let us know!

We are here to help sort out your planning and provide suggestions to make sure your event is a meaningful success! Visit our website, netrf.org/events and complete the event form and let’s get you on your way to promoting NETRF and raising important funds for NET research.

For questions about community events, please email Laran Hyder, Associate Director of Development and Outreach, laran.hyder@netrf.org.

Two NETRF-funded researchers received Career Development Awards at the 2018 annual meeting of the American Society of Clinical Oncology (ASCO), one of the largest and most respected gatherings of physicians in the field of oncology. The awards, offered by ASCO’s Conquer Cancer Foundation, fund three years of research on patient-focused topics.

Award Winners

Daniel Halperin, MD

MD Anderson Cancer Center
“Harnessing the Immune System in Neuroendocrine Tumors”

Nitya Raj, MD

Memorial Sloan Kettering Cancer Center
“Mutational landscape of pancreatic neuroendocrine tumors—therapeutic implications of genetic evolution over time and therapy”

“Our hope is always that NETRF funding helps pave the way for subsequent funding by organizations, institutions, or government agencies,” said Elyse Gellerman, NETRF Chief Executive Officer. “We hope to get promising projects with transformational potential off the ground. These two Career Development Awards affirm our selection of topics and investigators.”

NETRF’s grant support of Raj and Halperin occurred in the last two years. Halperin received a 2016 grant on the immune profiling of pancreatic neuroendocrine tumors. Raj received a 2017 Pilot Project to evaluate the role of liquid biopsy in the treatment of pancreatic neuroendocrine tumors. 

“The data gathered by these researchers during their NETRF grants played a pivotal role in competing for these prestigious grants, which will help to further the work started with NETRF,” said Effie Tzameli, PhD, NETRF Director of Research. “Each discovered information warranting further study. In this way NETRF’s funding provides proof of concept funding.”

NETRF’s funding of research conducted by investigators like Halperin and Raj is made possible by generous gifts from individuals, families, and private foundations.

“Donors want to know that their gift is leveraged, that it can open up additional funding streams that expand overall research of NETs,” said Susan Payson, NETRF Chief Development Officer. “This is a truly a win-win for the researchers, the donors, and NETRF.”

by Stacie Chevrier, NET Cancer Blogger

Every Sunday on the O Network’s Super Soul Sunday, Oprah asks her guest, “What do you know for sure?” This question has stayed with me and my answers stem from my diagnosis of a pancreatic neuroendocrine tumor in 2014.

However, before diving in, it’s important I preface this post by declaring that being diagnosed with a Neuroendocrine Tumor is awful. The pain and suffering proceeding this disease are real. I do not want to discount anyone’s experience, so please know that I see you and all of us impacted by this disease see you.

What I know for sure is that cancer will be the greatest teacher of my life. The lessons are vast, innumerable, and constantly evolving. Those that come to the top of my mind are: resilience, perseverance, humility, strength, letting go, being uncomfortable, grateful, mindful, kind and compassionate. I’m sure I would have eventually learned all these things, but cancer gave me a crash course and I am better person for it.

I know in the extensive world of cancer, I’ve got it pretty good. A slow growing disease, where patients are living decades. And not just living long – many are living well. I know NET survivors who have accomplished some incredible physical feats – marathons, triathlons, cross-country hikes, 100-mile bike rides, and scuba diving, to name a few. I know it’s not all sunshine and rainbows, but I could see where those with other cancers and diseases could be envious.

I know this statement may ruffle some feathers, but I’m happy I don’t look sick. I would rather be sick, without looking sick, than be sick and look sick.

I know my doctor is the right person to lead my care team. With only a handful of true specialists, choosing a doctor isn’t too difficult. Other cancers have hundreds, if not thousands of specialists, which I would find overwhelming. With our small NETs community, it’s easy to know whether you’re in the right hands or not.

I know who my friends are and are not. Those who stood by my side are true, loving, genuine, caring people. They are the kind of humans I want in my life. I also know what a surprise it was to develop new friendships with fellow survivors with whom I share an indescribable kinship.

And what I know for sure is that every sunrise, new moon, holiday, birthday, etc. is a gift. This is true for all of us – cancer or not but living with NETs – I know it and I live it, every day.

You can follow Stacie’s blog at staciechevrier.com  and on Twitter @StacieChevrier

Dispelling Myths about Palliative Care

Steve Pantilat, MD
University of California, San Francisco

The goals of palliative care according to Steven Pantilat, MD, University of California, San Francisco, are pretty straightforward—to do as well as possible for as long as possible when you have a serious illness.
Yet this type of medical care is sometimes viewed through the wrong lens and confused with hospice or end of life care.

As the keynote speaker at the 2018 NorCal CarciNET Community conference, which was sponsored by NETRF, Pantilat gave an honest, uplifting, and inspiring talk that painted an informed view of palliative care for patients, family members, and caregivers.

Pantilat outlined the benefits of palliative care:

• Better quality of life
• Better mood
• Decreased rate of depression
• Less pain
• Better health for family/caregivers
• Greater satisfaction with care

Then, Pantilat emphasized that there “were no adverse effects from palliative care.”

Panlitat peeled apart the misconception that seeking palliative care required patients to choose quality of life over quantity of life. “There has never been a study that shows palliative care makes you live less long. The choice between quantity and quality is a false choice,” said Panlitat.
Pantilat emphasized the importance of talking about your hopes for the future and working with your family and care team to realize those dreams.

ASCO guidelines recommend that those who have been diagnosed with metastatic cancer should see palliative care team within 6 months of diagnosis.

Pantilat is the recipient of the 2011 James Irvine Foundation Leadership Award and author of “Life After the Diagnosis: Expert Advice on Living with Serious Illness for Patients and Caregivers.”

Learn about other patient and caregiver conferences. 

This year marked the 10^th anniversary of the NETRF Research Symposium. What started as a small and informal gathering of scientific advisors and a handful of NETRF grantees has grown to be the go-to meeting for scientists and clinicians studying neuroendocrine cancers. We were delighted and thrilled to welcome an audience of more than 100 investigators from around the world, that traveled to the beautiful American Academy of Arts & Sciences in Cambridge, MA, USA, to hear experts talk about the latest in NET research.

The 10^th anniversary marked also an increase in the length of the meeting, as for the 1^st time we went from one day of presentations, to one and one-half days, an increase that underscores the growth of the Foundation and the higher number of grants we have awarded these past couple of years.

Another first was broader content. This year we had several clinical talks and an entire session dedicated to nuclear medicine. While NETRF has been and will continue to be the only conference offering a very robust program in basic and translational research, the recent expansion of our research portfolio to include clinical research, enabled us to offer more clinically-oriented content, a trend that we hope to continue in years to come.

Something truly special about our conference that I personally find remarkable, is that it has consistently been providing a platform for scientists to openly share unpublished data. Both last and this year, I witnessed a unique atmosphere of collaboration, trust, and collegiality, that has helped initiate and maintain many crucial collaborations between cancer investigators. And I was delighted to see that the survey results confirmed this, as almost 90% of the people answered “Yes” to the question “Have you met potential collaborators at the symposium?”.

Other survey numbers showed that 70% and 29% of attendees thought the presentations were excellent, and very good, respectively, and the level of engagement extraordinary. And for this, I can only thank the speakers and NETRF grantees. It is their hard work, focus, perseverance, and dedication to the study of neuroendocrine cancers, that has help make this meeting a success.  

NETRF would not be here if not for the many individuals and foundations that have provided and continue to provide generous financial support to help sustain our ambitious research portfolio. And for this we are deeply grateful. Your gifts fund the most innovative proposals and most dedicated investigators and enable the professional advancement of the next generation of leaders in cancer research.

Countless thanks to our Scientific Advisors and Board of Directors for their commitment and dedication to the Foundation, and the NETRF staff, that worked hard to put this event together.

And last but not least, my thanks to you all for helping make our 10^th year anniversary a success and see you next year!

With my best wishes,

Effie

Effie Tzameli, PhD
Director of Research
Neuroendocrine Tumor Research Foundation
effie.tzameli@netrf.org

By Susan Payson, NETRF Chief Development Officer

Having arrived seven weeks ago as the new Chief Development Officer, I have been so inspired by the team spirit of NETRF.

From our dedicated Board of Directors to my hard-working colleagues and the tenacious researchers at work to understand the behavior of neuroendocrine tumors, each person is committed to moving the needle closer to finding improved treatments and ultimately cures for the NET patients of today and tomorrow. It certainly takes a team to sustain the ongoing mission of NETRF.

Last year, over 1,500 donors chose to give a gift to NETRF. Charitable giving is personal, powerful and truly an extension of people’s values.

NETRF has been fortunate to receive gifts from a variety of constituents:

• Grateful patients and families
• Family foundations
• Bequest gifts
• Special events

Every gift is important so we can grant the needed funds It takes to the top research initiatives around the globe. In fact, since our inception, we have directed nearly $20 million toward 58 scientific projects underway in three continents.

Our research funding is global and so are our donors. Whether from a grateful patient in Canada to a group of work colleagues honoring the memory of a loved one in London or a generous grant from a foundation in California, NETRF is able to accept gifts in many ways and efficiently allocate them where they will have the greatest impact.

One of my goals will be to make sure that there are simple and easy ways to make a gift to NETRF no matter if it is a gift of appreciated securities, online gift, gift from a donor-advised fund or social media campaign. We receive a wide variety of donations each year. As the cost of science increases and the number of requests for competitive research grants expand so will the need for securing many more gifts to NETRF, thus broadening our circle of supporters.

In upcoming issues of our e-newsletter, we will feature some of the stories of our donors and how they choose to make their gift. I am grateful for the thousands of donors that have trusted us with their gifts over the years and look forward to getting to know as many supporters as possible. It is truly the power of participation that keeps us at the forefront of neuroendocrine research. If you are interested in learning more about ways of giving or to tell your giving story, contact susan.payson@netrf.org.

Maybe you’ve been told you had food poisoning, menopause, or colitis—when you really had cancer? Maybe your treatment in an emergency room caused a carcinoid crisis? Maybe you saw eight doctors over a period of six years before you were diagnosed with a NET? None of these is uncommon if you are a neuroendocrine cancer patient.

And now you don’t trust the health care system so much…

Well, you may not be alone. A new article published in JAMA Oncology explores the topic of trust among NET patients.

“Many patients with NETs sought…basic assistance from their physicians, only to be left to fend for themselves,” wrote author Eric Mou, MD, Stanford Health Care.

NET Cancer: A Poorly Understood Disease

Mou quotes a patient he met at a NorCal CarciNET Community meeting who said, “When you have to educate every physician that you meet, and you realize that you know more about your disease than they do, it makes it so difficult to build trust and confidence in the medical community.”

NorCal CarciNET Community President and NETRF Board Member Josh Mailman assists and advocates for NET patients around the world. “When you are facing a cancer diagnosis it is essential that you be able to put your trust in your doctor and the health system behind them, as you are trusting them with your life.”

Increasing Provider Awareness of NET Cancer

Mailman was part of the group that welcomed Stanford researchers to their community meeting to increase awareness among physicians about NET cancer and the NET patient experience.

Mou and co-authors Lidia Schapira, MD, and Pamela Kunz, MD, send the oncology community a message: “It is imperative that we understand that the inherent differences across the spectrum of malignant neoplasms we encounter should prompt us to tailor our care to each patient’s distinctive experience of their disease.”

Mailman sat down with co-author Pamela Kunz, MD, at NETRF’s Annual Research Symposium to discuss the impact of the article.

Offering NET Cancer Patient Education

“Commonly patients face an uphill battle before getting an accurate diagnosis. If patients are misdiagnosed and misdirected, mistrust may take root and more importantly treatment is delayed,” said NETRF Chief Executive Officer Elyse Gellerman. “We work hard to educate and empower patients in their journey to help them find answers.”

The NET Research Foundation hosts patient and family events across the country during which NET specialists discuss treatment options. The events help to bring patients and specialists together in the same room to narrow the communication gap between patient and provider.“With education, a patient is best equipped to ask the right questions of their care team and to make sure they have the right care team,” said Gellerman.

Theresa Wittenberg, PA, Stanford

Hear more about trust in the NET patient/provider relationship in this talk by Theresa Wittenberg, PA, Stanford Health Care, presented at a NETRF patient and family conference. Wittenberg is credited with bringing this issue to the attention of the JAMA Oncology article authors.

Source: Mou E, Schapira L, Kunz P. The Power of Trust. JAMA Oncol. Published online April 26, 2018. doi:10.1001/jamaoncol.2018.0495

Request for Applications Issued

The Neuroendocrine Tumor Research Foundation (NETRF) has announced its latest Request for Applications (RFA) and invites innovative research applications in neuroendocrine tumors (NETs) that can bring the field closer to more effective therapies. 

Elyse Gellerman, NETRF CEO

 “We are looking to fund research capable of having a rapid impact on improving care for NET patients,” said Elyse Gellerman, NETRF Chief Executive Officer. “These are significant grants meant to attract the most talented researchers around the world.”

This uncommon cancer occurring in hormone-producing cells is often overlooked for research funding. NETRF serves as the major private funder of NET cancer research. “There have been many recent discoveries that have changed the way some cancers are diagnosed and treated,” said Daniel Chung, MD, Co-chair, NETRF Board of Scientific Advisors. “But the treatment of NETs lags behind. We need to accelerate our search for effective treatments and are looking for transformative ideas.” 

To ensure that high-quality, meaningful research proposals are selected, NETRF uses a rigorous peer review process, which includes external expert reviewers and a Board of Scientific Advisors.  “We are seeking cutting-edge research proposals that apply novel science and new technologies to help advance existing knowledge and accelerate the development of diagnostic and therapeutic interventions for patients,” said Effie Tzameli, PhD, NETRF Director of Research.

Interested applicants must submit a letter of intent by June 15, 2018. From that pool, exceptional investigators with the most promising and transformative ideas will be invited to submit full proposals. Grant awards will be announced in December 2018.

Effie Tzameli, PhD, NETRF Dir of Research

Last year NETRF invested heavily in a targeted form of radiation called peptide receptor radionuclide therapy (PRRT).  “While we invite basic, translational, and clinical research applications in gastroenteropancreatic tumors, we are excited to announce the creation of a new fund this year dedicated exclusively to the study of lung carcinoids, and we expect to fund at least one such grant”, said Tzameli.

The NETRF Board of Directors reinforced its commitment through this offering. “We are committed to projects based on strong science that can both increase our understanding of these tumors, while also offering real potential for extending and improving patients’ quality of life,” said Joseph Li, MD, Chair, NETRF Board of Directors.

Since 2005, NETRF has funded $20 million in scientific research grants to expand the molecular understanding of NETs and help drive personalized treatment options for patients. The grants fall into three categories: Accelerator Grants, Investigator Grants, and Pilot Project Grants. NETRF has funded research projects in the U.S., Canada, United Kingdom, Switzerland, Australia, and the Netherlands.

Learn more about NETRF’s 2018 Grant Opportunities. 

PRRT Patients Tell Their Stories 

Following the early 2018 FDA approval of the first Peptide Receptor Radionuclide Therapy (PRRT) using lutetium Lu-177 dotatate, many people are curious about this new treatment option. 

The drug’s manufacturer, Advanced Accelerator Applications (AAA), recently published a booklet featuring five patient stories.  “A Journey of Hope: Toward a Brighter  Future in Neuroendocrine Treatment” featured 13 lessons learned by those facing NETs.

In the booklet, you’ll meet Doug, Eileen, Jennifer, Terry, and Mark. Each manages NET cancer at a different phase of life. The other aspects of their lives include:

• Teaching kindergarten
• Starting a family with cancer-related fertility issues
• Seeing children graduate and get married 
• Starting retirement 
• Parenting young children and dating 
• Enjoying extreme sports

But they share symptoms and at least one treatment approach: PRRT.  As these individuals wind their way through active treatment, relapse, and survivorship they learn: 

• Acceptance
• Perseverance
• Strength
• Humor
• Clarity

AAA compiled their lessons as hands-on tips for other facing this novel and difficult diagnosis. 

Lessons Learned by NET Patients 

1.  NET, like other cancers, affects the whole family, working as a team eases the burden.
2.  Embrace the life you enjoy, despite the obstacles.
3.  As it is hard to absorb all the information your doctor tells you in an appointment, ask if you can record the visit.
4.  Respond to your body’s needs.
5.  Advocate for yourself.
6.  Trust that you know your body.
7.  Specialists can partner with your local doctors.
8.  Family, friends, and faith can offer invaluable emotional support. 
9.  Live life to the fullest.
10.  Getting to the right doctor and the right treatment takes time and patience, but it’s worth it. 
11.  Being able to laugh at the challenges makes things feel better.
12.  Consider what and how to share information about your disease with young children. 
13.  Find positive, meaningful ways to direct your energy, such as hobbies and volunteer work.

Learn more about PRRT in this AAA patient brochure. Check out NorCal CarciNET Community’s nuclear medicine locator to learn more about where treatment may be offered.     

Remember, PRRT is not for everyone. Talk to your doctor about your treatment options. 

Check out other NETRF PRRT info:

• PRRT Approved by US FDA
• What is PRRT
• Physician Talks on PRRT 

NETRF announces the appointment of Susan Payson as Chief Development Officer. In this new position, Susan will work to expand NETRF’s base of support to better fulfill our mission to fund NET research.  

“I am delighted to join the NETRF team to raise critical funds to support promising transformational research, aimed at improving care for patients,” said Susan. 

As a seasoned leader with three decades of experience, Susan brings comprehensive knowledge of charitable giving to NETRF.

“We are excited to have Susan on our team, with her expertise and enthusiasm for our work,” said Elyse Gellerman, NETRF Chief Executive Officer. “Philanthropy is a personal expression of hope and change. Susan will partner with donors to meet their philanthropic goals while we continue our search for cures.” 

After 13 years at Dana-Farber Cancer Institute, Susan served as Senior Vice President of Philanthropy at Northeast Health System, now Lahey Health. Susan also served as Director of Advancement at Shore Country Day School in Beverly, where she managed the overall communication and philanthropy programs and the school’s first comprehensive capital campaign.

Cancer fundraising is more than a career for Susan. It is personal. “After losing my mother 35 years ago to cancer, I made a commitment to help contribute in some way to the search for a cure. Today, my mother’s cancer could have been treated, because we are making progress.” Susan understands the true impact of fundraising is about helping patients and their families to live their best lives.  

Feel free to personally welcome Susan by telephone 617.946.1782 or email.