The Tapestry Project: Weaving the Strands of NET Care

Effecting change may begin with one voice, or even two…but in order to see results, I believe it takes multiple voices and cooperation among the many who have a stake in future outcomes.

It reminds me of a tapestry artist with a vision in mind who has to go through the process of choosing colors and painstakingly weaving them together in order to achieve the desired piece.

It is out of this image that the Healing NET Tapestry Project has grown. At this year’s Healing NET Summit, we interviewed people who are invested in NET care. There are many more voices to hear and faces to see out there, like yours! We are excited to have you join us in this effort! We want to read your words, see your photos, watch your videos. See a video to get a taste of this effort and find out how you can participate.

Building Healing NET Foundation has been a step by step process that began with a conversation between a patient and a doctor who saw a big need for helping patients whose doctor didn’t understand their disease and educating those providers to better diagnose and treat the disease. It was necessary to bring together other patients, caregivers, colleagues, and physicians as we formed a Board of Directors and Scientific Advisory Committee. Initiatives like the NET Primer (now updated in a 2nd edition), travel grants and physician exchanges came to fruition from those efforts. Industry support led to the Healing NET International Summit, and networking continues among NET physicians, nurses, advanced providers, and researchers here and abroad.

It takes all these voices and perspectives to work together with a common desire or “thread” to help NET patients achieve the right treatment, by the right team, at the right time. Optimizing care is at the heart of Healing NET's mission.

NET Cancer Awareness Day November 10--Giving Peace and Thanks

I want to ask each of you to pause for a moment of silence and reflection in observance of NET CANCER AWARENESS DAY November 10. Remember the Zebras who have fought the good fight and finished the race in the last year, and imagine peace for their family and friends.

This song was composed by fellow Zebra and Los Angeles Carcinoid and Neuroendocrine Tumor Society (LACNETS) Executive Director Giovanna Imbesi to honor those who have passed and to celebrate those who are enjoying another year of life. Vocalist Lettrice Lawrence brings the words to life in her beautiful performance. (SEE LINK BELOW)

Give Me Peace
Composed by Giovanna Joyce Imbesi
©2018 ASCAP

Give Me Peace
So I may rest now
Let me go
oh, let me go
Free my soul
To the mountains
Let me rest
My body down
And in the dawn
I will be woken
I will be woken
By precious song
Song of love
Sing me love
And hold me
Yes, hold me
Forever on.

LISTEN to a performance by vocalist Lettrice Lawrence at the LACNETS site. This song had its world premiere November 7, 2018!

As we observe another NET CANCER AWARENESS DAY, I'm struck by the people in my life who lift me up daily, who are there when I struggle, and who give me peace. Can you think of someone in your life who is your rock, your biggest cheerleader, and in whose presence you feel safe?

Consider this quote from Meister Eckhart: "If the only prayer you said was thank you, that would be enough."

Who would you say THANK YOU to...on NET CANCER AWARENESS DAY, during the Thanksgiving season, every day?  Who can you offer PEACE?

2018 Healing NET Summit--Chapter Three

"When you drop any new idea in the pond of the world, you get a ripple effect. You have to be aware that you will be creating a cascade of change." --Joel A. Barker

The ripples continue to spread out from the Summit in February. Task forces are at work discussing new ideas on how to support better communication between NET patients and their health care providers, processes to evaluate what services and staff an Advanced Neuroendocrine Center provides, and the beginning work of designing a NET Boot Camp for healthcare professionals. The Healing NET Scientific Advisory Committee is also updating Neuroendocrine Tumors: A Primer for Healthcare Professionals, based in part on Summit findings.

In addition to concrete plans being laid, many ideas were exchanged over meals, in passing and late into the evening that will eventually find their way out into the world. This year's Summit experienced that reality when Dr. Andrew Hendifar presented a paper on the accurate sub-typing of a NET tumor that developed from a conversation he had with representatives of Biotheranostics at the 2017 Summit.

That organic process can also help you see more clearly where not to go. The breakout session group that met to discuss Structure of Expanding Research produced several slides to share with the faculty at large, and one included the statement: "Probably not feasible for Healing NET to fund or coordinate, but don't underestimate the value of face-to-face networking facilitated by Healing NET Foundation." The group recognized what did not fit Healing NET's mission but also saw specific areas where collaboration and sharing could speed discovery.

There are also consensus-building opportunities. The same research group asked the faculty at large this question-- "In an orphan disease, can a well-maintained (funded) database (i.e. ENETS) answer the questions that we have traditionally relied on randomized controlled trials to answer for us?" Seventy-one percent of the faculty answered, "Yes, of course, it's time for real-world data to shine." Other areas where collaboration could foster results are matching patients to clinical trials and agreement on the necessary ingredients for patient selection when studying high grade neuroendocrine cancer.

As the task forces do their work, and as the consensus and collaboration ripples continue to move further out into the NET community, and into society, we see HOPE for enhanced care, more education, and a wider net of awareness about neuroendocrine cancer.

2018 Healing NET Summit - Chapter Two

The 2018 Summit theme “Working Together” sums up what this annual gathering of neuroendocrine expert physicians, researchers, scientists, and nurse/nurse practitioners has evolved to over the course of three years. From debate sessions in 2016 to identifying unmet needs in 2017, this forum that brings together professionals from the U. S. and Europe has worked well together from the very beginning.

This context of collaboration allows topics to be discussed that are not easy ones. Two challenging topics that represent the provider side of “Healing NET” were among those tackled in breakout sessions this year based on findings in prior years: Advanced Neuroendocrine Centers and NET Boot Camp.

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Looking Forward with HOPE

As 2017 comes to a close and I reflect upon all that's happened, it gives me great hope that we're doing something to make a difference. The fact is there are more and more people with neuroendocrine cancer. One study showed that the number of people diagnosed has risen 50% over the past decade and unfortunately, I worry that it is an underestimate. This year, I've seen people from all over the world with neuroendocrine disease, young and old, women, and men, all races. As a patient population, this disease is growing; but as a community, we are growing to fight it.

There have been many accomplishments this year to better diagnose and treat patients. The new NETSPOT Gallium PET scan is much more widely available throughout the United States. The medication Xermelo is now available to help people with carcinoid syndrome. A MAJOR achievement is the imminent approval of the new LUTATHERA treatment (PRRT or Peptide Receptor Radionuclide Therapy) in Europe and the United States! This treatment will be a whole new mechanism of action for treating people with neuroendocrine cancer. Coupled with NETSPOT, it will be a new tool in the toolbox.

I think it will be important to think about 2018 with hope, but also a dose of reality. LUTATHERA, even if it is approved by the FDA here in the United States, will still have some growing pains. Let's go through the possible "naughty" list of things that will likely make it a challenge to get:

•    It will be an expensive therapy.  
•    Insurance companies will probably be slow to adopt and cover   it. 
 •    It will probably take a lot of work from the doctor's office to get it approved.  
•    Only a few centers around the country will offer it
•    Many doctors don't understand it
•    It's a complicated therapy to setup.

With all that said, the true neuroendocrine champions will be ready. For example, we do it here already in Denver because we believe in it, and the known NET experts at other facilities across the U. S. do as well. As leaders in the field, we've been working closely with all the parties to make this a smooth transition. The Healing NET Foundation is dedicating a large portion of the 2018 International Healing NET Summit to discussing the ins and outs of LUTATHERA . We want to help physicians understand what is at stake. Sure, it might be a headache to get started, but it is worth it. I've seen this therapy help so many people.

With just a few days left in the year, I want to thank you all for your support of the HEALING NET FOUNDATION and our Neuroendocrine Community. We are all in this together. Every year, every week, every day is a gift. Being able to work with all of you is truly an honor for me. But there is so much more work to do. Stay strong - stay healthy - I need you all to be warriors in our crusade. Happy Holidays and Happy New Year to you all!


A NET Caregiver's Story

When I first met Gil Schaenzle this past September, I was immediately struck by her positive demeanor and lovely smile. I was meeting a woman who had lost her daughter six months ealier, and that was after just nine months of frustrating and devastating twists and turns following Anna Rose's diagnosis of a high grade neuroendocrine tumor.

I understand the roller coaster as a NET patient, and I understand what it feels like to be a Mom to two daughers. I had no idea what it felt like to lose one's only child. It was astonishing to me to greet this warm and compassionate woman and have her want to hear MY story, as well as being willing to talk about her story as a caregiver to her belowed daughter. When she told me what a warrior Anna Rose was, I could not help thinking, "she had some good mama warrior training".

Backtrack to when Gil first emailed me about her idea to run in the National Parks in memory of Anna Rose, and to raise awareness about NET cancer--I cried. Tears are underrated, by the way. I think they are very healing. Being willing to publicly share your grief, greet strangers on a trail in the wilderness, and go on NATIONAL TV to talk about your loss as well as hope for other NET cancer patients...well that is also healing, but it takes guts. Gil is a mama warrior.

There is great healing and power in telling your story, and the tears that fall and the joy that is remembered. If you are a NET patient you get it when another patient tells their story--there are parts that resonate with you and assure you that you are not alone. If you are a NET caregiver, you know tears are going to come now and then, and you understand the worries and frustrations and, again, you are reminded you are not alone. If you are family or friends, it's harder to understand but love and compassion help you deal with the uncertainty, and hearing the stories affirms, again, that you are not alone. If you have never heard of NET cancer before but listen to the story of a mama warrior who transcends her own grief to make a difference for other NET patients, you surely can't help but feel connected in some way.

In telling our stories, hearing the stories, and sharing the stories, we connect and harness an incredible power for hope and healing. Our website has a place where you can TELL YOUR STORY.

I encourage you to FOLLOW Gil and her journey over the course of the next year, and tell and share your own stories. You never know who may be connected with that power of hope and healing.

Nutrition Tips for NET Patients 3--by Leigh Anne Burns, MS, LDN, RD

INTRODUCTION by Cindy Lovelace “As Executive Director of the Healing NET Foundation, I have a unique understanding of the NET patient experience, since I am a patient myself. Sometimes, like most of us, I’m not so “patient” when it comes to my care. I want to feel well, and I want to enjoy life. When what I eat seems to be “messing with me”, I get impatient, grumpy, and frustrated.

Every time I listen to a presentation from Leigh Anne Burns, one of few nutritionists really educated and experienced with NET Patients, I pick up a new tip. I remember a conference where I heard I should eat smaller, more frequent meals, and even a tip to drink before and after I eat, but not during. She refers to these methods and the reasoning in her last Nutrition Blog for Healing NET.

What I learned the last time I heard Leigh Anne speak was that the pancreatic enzymes I’d been using might not be effective. (I had a distal after being diagnosed as a PNET in 2011) I learned they might not have enough of the right ingredients or the right balance to do the best job. A sure sign was some symptoms most of us can identify with—yep, the “poop”. I was worried that my cancer had progressed or I would have to completely stop eating some of my favorite foods. What I realized was that I might just have a malabsorption issue. I was not getting ENOUGH digestive enzymes to break down the foods, even though I kept to a low fat diet and rarely ate sugar. But, I had moved to over the counter enzymes because the prescription version I had been given initially gave me some unwanted side effects. As a result of what I learned from Leigh Anne, I researched and learned from other patients that there was a new prescription on the market and asked my physician about it. Since trying it, my symptoms have diminished, and I’m not having the side effects.

It’s a simple thing, but points out why nutrition is so important as a part of our care as “zebras’. In her final notes below for “Operation Preparation”, Leigh Anne mentions factors that can lead to malabsorption—

Even healthy fats such as fish oils in cold water fish (salmon and tuna), as well as plant-based fats such as avocados, olive oil, and canola oil can still be related to malabsorption.

It’s very important to read labels. That healthy reduced fat salad dressing you are using may have a serving of fat increased to 1 Tablespoon. Remember one serving of fats is 1 TEASPOON. Margarines or butter can have more than one serving as well.

Severe fat malabsorption can cause fat soluble vitamin deficiencies as well.

Ask your physician about pancreatic enzymes if you’ve had a dissection. Remember they are taken prior to meals, and it’s important to follow the instructions carefully.
Currently there are no national dietary guidelines developed specifically for NETs. On October 18 Leigh Anne will be conducting a Webcast “Nutrition for Neuroendocrine Tumors and Carcinoid Syndrome- Find foods you love!” You can register for this event at, courtesy of Lexicon.

Nutrition Tips for NET Patients 2--by Leigh Anne Burns, MS, LDN, RD

The diet for helping to manage secretory diarrhea is similar to the diet for treating diarrhea from most causes. It uses guidelines to help absorption such as:

  • Good Foods to select are usually higher in complex carbohydrates such as starches with lower amounts of insoluble fibers or whole grains.
  • Reduce Foods high in concentrated sweets and sugars such as fruit juice, sugary cereals, added sugars, high fructose sugars, honey, and syrup can increase stools.
  • Reduce high fat foods such as those fried in oils, high fat content such as ribs, bologna, pepperoni and other high fat cuts of beef and pork.

Tips to choose foods individuals enjoy and also control symptoms:

  • Foods cooked soft and low in fiber may be the easiest to absorb such as potatoes with out skin, rice, crackers, winter squash, breads with 3 or less grams fiber.
  • Soft fruits without peels, cooked vegetables
  • Fruit juice serving are 1/3 to 1/2cup and may be tolerated better if diluted with water.
  • 1 – 2 teaspoons of fats can usually be tolerated but higher amounts of even healthy fats may increase symptoms.
  • Read Labels and the ingredient list to identify how much sugar, fat and fiber are in foods. Beware of hidden sugars.

Here is a recommended link for information on hidden sugar in foods:

Here is a recommended link for information on hidden fats in foods:

Dumping Syndrome: Symptoms of dumping syndrome include: feeling weak, dizzy and/or flushed within 30 minutes of eating. Cramping, pain, nausea, diarrhea and/or sweating may also occur. Tips to avoid diarrhea:*

  • Eat 4-6 small meals throughout the day
  • Try to eat a source of protein at each meal (such as: poultry, red meat, eggs, tofu, milk, yogurt, or cheese)
  • Limit concentrated sugars like candies, cookies, soda, juice, and syrup
  • Drink fluids 30-60 minutes before and after meals and snacks, but not during meals
  • Choose foods with soluble fibers (such as: oats, quinoa, fruits and vegetables without peels, and legumes)
  • Avoid extreme hot or cold foods and beverages
  • Eat slowly and rest for 15 minutes after a meal with feet up

Click here for a table of foods to avoid and foods to include if you deal with dumping syndrome.

Nutrition Tips for NET patients - by Leigh Anne Burns, MS, LDN, RD

Nutrition Tips for NET patients - by Leigh Anne Burns, MS, LDN, RD


Begin a food/symptom log to help track possible problem foods. Over the next few weeks we will discuss some of the symptoms and modifications that can help better select foods for the individual. Remember, Registered Dietitians such as myself, trained in treatment of patients with NETs, can be helpful in guiding you through the best meal plan for you.

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Feel Good by Doing Good

Doing good does a person good. You may find that is true of your personal experience, but it’s also a finding of research. When a person volunteers or contributes to a cause, it can even lower blood pressure. Stephanie Watson, reporting on a Carnegie Mellon study in the Harvard Health Blog, noted that: “The Greek philosopher Aristotle once surmised that the essence of life is ‘To serve others and do good.’ If recent research is any indication, serving others might also be the essence of good health.”

“Operation Preparation” can be a way you can feel good by doing good. Your leadership in creating an online social FUNdraiser for Healing NET Foundation gets you involved in doing good. It’s easy. You tell your story or connection to NETs, upload a photo that reflects you or your connection, and share the page with friends! Not only will it make you feel good, but will hopefully boost the health of your friends who get involved! But let’s take it a step further. It might even touch people you have never met.

One of the challenges of a diagnosis of neuroendocrine tumors is that many people are not aware of the disease and its impact. Creating a social fundraiser is not only a chance to raise funds for an important cause, but also a great opportunity to raise awareness. The more people who have heard of this disease, the better. You never know who you might touch. An undiagnosed patient? A caregiver who needs inspiration? A physician who needs education? Or maybe a media or business person who could take awareness a step further!
Design a FUNdraise that catches on, and you can have impact on many fronts. We hope to receive your application today! Click here to sign up!

Cindy Lovelace: Perseverance over Performance (Walk, Run, or Support--Zebras do it!)

My goal is to start and finish the race. The idea of a 13.1 mile race (Half-Marathon) is pretty daunting. If you’ve never done anything like that before, even 3.1 miles (5K) sounds intense.

Last fall when Cindy Parcell brought up the idea of inspiring fellow Zebras and their friends to join her for the Rock N Roll Marathon in Nashville Spring 2017, I immediately said “I’m in!”. It was not because I’m some elite runner, or even a decent Saturday morning neighborhood jogger. I admittedly like challenges, and I love it even more when people come together to achieve things. I think that’s how we are meant to live. My life is also focused on the commitment made when Dr. Eric Liu and I co-founded Healing NET Foundation—to help neuroendocrine patients get the best and the right care. While it’s important to run the organization to the best of my ability; I also feel a responsibility to be a role model. I can run for those who can’t, and inspire others to do the same.

However, let’s put all the cards out there. I knew in the back of my mind that I had trained and finished an entire Marathon course once before. I was also inspired by “Coach Cindy”. She’s a patient and she runs these races all over the country! Now, she told me her “Panda” team was not leading the pack, but my enthusiasm might have slightly blinded me to some new realities.

When I did that marathon in 2002, I was 15 years younger, I had never had a cancer diagnosis, and I was about 20 pounds lighter. So, when I laced up the running shoes and started in on Cindy’s suggested training schedule back in January, reality set in. My body had changed.

The first reminder was the stretching. I had fallen behind on my yoga exercises, and I needed to stretch…a LOT, before and after. If I didn’t, I’d be hobbling through my day. Then, I was dismayed that one mile on the treadmill was exhausting, AND I was just doing a slow jog. However, I kept going, and even when travel and a respiratory infection interfered, I just took up where I left off and kept plugging away. I didn’t beat myself up over missing a day, or not completing the suggested number of miles. It really reminds me a lot of fighting cancer. From my first cancer diagnosis in 2005 (breast) to my second one in 2011 (neuroendocrine) I’ve always had the mindset to just keep going…ride out the storm…try to keep one step ahead of the beast.

The beast played a big card recently when my husband and I went on a family trip, and we had the opportunity to participate in a 5K. It was fun and in a tropical place, and I was training…so why not! During the race, the neuropathy I’ve dealt with ever since chemo treatments with my breast cancer, reared it’s ugly numbness and pain. My feet felt like dead weights. I had been doing a combination fast walk/run and during the run part, I stumbled a couple of times. I decided then that it was not worth the risk of a fall to push myself to do something that my body just can’t do. However, it doesn’t mean I quit. I find a different way. So, I power walked the rest of the 5K, using mind focusing tricks I learned in my first marathon training. It wasn’t pretty or graceful or fast. I just finished the race.

So, my training is now focused on my walk. I can do a 15 minute mile, and even if I’m not up to that speed on race day for whatever reason, I still have some grace to finish the race under the four hour maximum. It doesn’t matter what place I’m in, or how many people pass me, or how athletic (not) I look. I’m just going to take it a mile at a time, and I am going to start and finish the race.

Timing of surgery (especially with small disease)

I have pretty strong feelings about the timing of surgery.  I understand that when people hear about having ANY kind of cancer they want to have it removed as soon as possible, but that’s not always the case for neuroendocrine.  In general, neuroendocrine tumors are very slow growing and you’ve probably had the tumors for a while.  In a truly newly diagnosed patient, it’s always best to take a deep breath, understand what’s happening, do ALL the tests necessary for the work-up, and then decide what to do.  Maybe that includes getting a second opinion.  Maybe surgery is the best next step.  But at least you’ll have done the proper evaluation and work-up.  

For those who have had prior surgery, maybe been living with disease for some time, and are re-evaluating the possibility of surgery, then it is absolutely imperative to think about the timing.  Remember, surgery is a big deal with associated risks.  We only like to do it when it can provide the best benefit.  In my opinion, if you’re symptomatic and surgery will help, then go for it to relieve the suffering.  If there are no symptoms, then how can you maximize the benefit with one single operation?  Maybe wait until tumors are even a little larger before surgery?  Maybe decide which ones are growing fastest and need to be removed?  See, it’s not so simple, so I always encourage people to think about it and make sure you’re comfortable with the decision.

Dr. Eric Liu
Neuroendocrine Surgeon--The Neuroendocrine Institute at Rocky Mountain Cancer Centers
Co-Founder and Chief Medical Advisor Healing NET Foundation

Dr. Eric Liu’s Year End Review


It's hard to believe that another year has gone by. We've helped many of our zebra warriors, but lost some also. For those we've lost, I want their families and loved ones to know that the Healing NET Foundation continues to fight for them.

So much has happened this year in our neuroendocrine world. The biggest news was the FDA approval of the NETSPOT 68-Gallium-DOTATATE PET/CT scan for NETS!!!! This accomplishment means a lot to me as I saw the very first one performed in the United States 6 years ago. When I first starting doing the scan and seeing its true power, I couldn't wait until we could share it with all of the neuroendocrine patients here in the United States. A true collaboration between research physicians, the FDA, and Advanced Accelerator Applications (AAA), the approval of NETSPOT will change the way we take care of NETs here in the United States.

We also saw the release of the amazing data on Lutathera, the peptide receptor radionuclide therapy (PRRT) also championed by AAA. Hopefully, when the therapy is approved in 2017 we will able to treat so many more patients. I was incredibly excited when we gave a dose here in Denver last week. I've seen it in action in Europe - it will be a great tool to have here in America.

Another new advance was the release of the data on Telotristat from Lexicon. Telotristat is a medication that specifically blocks the production of serotonin and hopefully can help many people with severe Carcinoid Syndrome. Another great tool to have in the toolbox.

The Healing NET Foundation was also busy at work. We had the first HNF Summit in the Rocky Mountains where the top NET experts in the world could talk and debate about tough topics in NETs. I was blessed to hear the ideas of many brilliant people and hopefully improve the way we think of NETs.

We've made a lot of progress in our little Neuroendocrine world. But 2017 will only be more exciting. With these two new treatments available, we'll be able to help so many more people. I know there's more research going on and even that Oncolytic Virus in Sweden is moving along. Oooo, I just can't wait!

For those of you who have gotten to know me, I always say that we are all warriors in this crusade. Get out there and tell people that we're here. Tell them this disease is real. Tell those newbies they aren't alone. If we work together, others will begin to understand what NETs are and that we need more research, more awareness, and more care.

Have a wonderful, blessed holiday season, and a Happy New Year!

Dr. Eric Liu Neuroendocrine Surgeon--The Neuroendocrine Institute at Rocky Mountain Cancer Centers Co-Founder and Chief Medical Advisor Healing NET Foundation

Cindy Lovelace's End Of the Year Review

As we turn the corner on 2016 and look to 2017 with hope and anticipation, I think it’s important to first say THANK YOU. Healing NET Foundation began three years ago with a vision and dream to think globally about how a physician and patient together could make a difference in the lives of NET patients and their caregivers. Our collective frustration at the lack of knowledge and resources among community physicians, and the possibilities of what technology available in Europe could bring to the U. S. were huge motivators. However, the vision and dreams could not have developed if not for friends and colleagues who believed in the Healing NET Foundation mission, the collaboration with other NET patient advocacy groups and expert physicians and health care professions, and without YOUR support. THANK you for the donations, the sharing of information, and the kind words that keep us going.

Dr. Liu has shared a perspective of where the NET community has come in the last year. I want to add to that from my perspective of both patient and Executive Director of Healing NET Foundation, and also introduce you to some folks who will play key roles in our growth and in our programs for 2017.

Our HNF Board of Directors is made up of patients, caregivers, business men and women, and physicians. They have various reasons why they serve, and I invite you to learn more about them HERE. They all bring different gifts of expertise and experience, but what they all have in common is heart. They want to give back. They want to make a difference.

Each year our Board comes together for a strategy meeting. We evaluate what has been accomplished, and we look at how we can best set up for the future. From our inner workings to the fruits of our labor you see, we put ourselves under the microscope, and we dream. I’d like to share a few insights from our recent session.

Healing NET Foundation has experienced exceptional reach and growth in our three years, and with that comes challenges. As relationships grow, and opportunities present to serve NET patients more, we have to be properly staffed and prepared to take full advantage. There is no time to waste in the NET community. This year we hired an administrative assistant. Several of you met Terrance Lewis this fall at the NCAN conference in New Orleans. He has brought much needed support to the organization; taking care of day to day business including thanking our donors, updating website, and keeping our books in order. As we look to 2017, we see how additional staffing is not a luxury, but a necessity to keep current programs, like the NET Primer and our Insights surveys, growing, and launch new ones.

We are also outgrowing office space, which has been a blessing this past year, as one of our Board members graciously donated in-kind our monthly rent and utilities. What a gift! In 2017, as we add a staff member, we will look for low cost, but appropriate facilities to grow responsibly.

We have set the date for our second HNF Summit, in February 2017. The inaugural Summit, Feb 2016, was an opportunity to see if we could bring together NET physicians from around the world, to discuss the intricacies of this disease. From every discipline, and from many different perspectives, it was a challenge to see if the dialogue could be meaningful and constructive. Wow, we were blown away by the ability of these great minds to debate, think, discuss, and think some more. We saw bridges built, and new collaborations begin. The stage is set for this year to further develop these bridges, and we are adding other health care professionals to the mix. How can the nurse practitioner, and the patient navigator help NET patients travel a complicated medical maze? How can patient advocates all work together to serve the community best?

As we look to 2017 with hope and anticipation, I am struck by the resilience of everyone engaged in this fight for better awareness, education, and care. My family would agree that I’ve always been a bit stubborn. When someone tells me no, I want to know why not. It can be a mixed blessing, but when it comes to surviving NET cancer, it has served me well. I also see that same (let’s call it resilience) quality in the patients I talk with weekly, the physicians and allied health care workers who are so passionate about this work, the folks who have cared and fought for loved ones, and the people who have not been personally touched, but who see a great need, and want to do whatever they can to help exceed it.

Together, we can do this. Thank you.

Cindy Lovelace, Co-Founder and Executive Director, PNET survivor

Click here for Dr. Eric Liu’s Year End Review