Social Impact Heroes: Why & How Maryann Wahmann of Neuroendocrine Cancer Awareness Network Is…

Posted on

Social Impact Heroes: Why & How Maryann Wahmann of Neuroendocrine Cancer Awareness Network Is Helping To Change Our World

We lead people by understanding exactly what they are going through. Then we make them part of the family. I like this quote by Eleanor Roosevelt: “To handle yourself, use your head; to handle others, use your heart.” You can’t fake caring.

As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing Maryann Wahmann.

One of the founders of NCAN, Maryann is the organization’s Executive Director, as well as the face of NCAN. She is the recipient of several advocacy awards for her outstanding dedication, including the 2010 Warner advocacy award and the 2016 AONN Hero of Hope Award. Maryann spent years trying to pinpoint the cause of her gastrointestinal (GI) symptoms. When she found the cause — carcinoid cancer, a type of neuroendocrine tumor — she dedicated her life to working to make sure others don’t suffer as long as she did.

Maryann joined a carcinoid support group and then led one of her own. In early 2002, she and her husband, Robert, helped grow a small local group from just a handful of people to more than 100 NET patients. In addition to continuing to run this support group, Maryann co-founded the Carcinoid Cancer Awareness Network to help grow awareness, provide information, and raise money for research.

Since then, she has been hard at work operating a carcinoid cancer hotline open 7 days a week 365 days a year, from 9 am to 9 pm EST. In fact, she has stated, “we want the person calling to know that the person answering understands first-hand about the disease. There’s no message taking or passing the responsibility.”

She also organizes national and regional conferences that bring together patients and renowned NET specialists, social media support groups, and hosts fundraisers and patient-centered events throughout the year.

Maryann established November as NET Cancer Awareness Month in the state of New York and worked with international partners to establish an annual Worldwide NET Cancer Day in November. She also adopted the zebra as NCAN’s mascot because like the stripes on the zebra, no two NET patients are alike. Much of NCAN’s success is due to her dedication to helping patients face a disease that’s unusually difficult to diagnose.

Thank you so much for joining us in this interview series! Can you tell us a story about what brought you to this specific career path?

I am a neuroendocrine cancer survivor who was diagnosed in 2001. My journey to diagnosis took 7 years, seeing 5 doctors with symptoms like rectal bleeding, uncontrollable diarrhea, flushing. — I was told to eat more fiber, watch my diet and once was even told that it was a sign of a bad marriage and that counseling would help. I KNEW that there was something wrong and so I went to a 6th gastroenterologist, and basically begged him to search until he figured out what was wrong! I was inspired by that long and painful journey to advocate for other patients so that no one else would have to go through what I had gone through. That’s how NCAN was founded. 21 years later we are still on a mission to fight neuroendocrine cancer.

-Can you share the most interesting story that happened to you since you began leading your company or organization?

There have been so many! But right at the beginning, our first conference happened in a spontaneous fashion. We had been to a conference in California where we met the experts who really know how to treat neuroendocrine cancer. When we got home we just said “Let’s do a conference for patients on Long Island.” So we booked a hotel, invited one of the experts to come and speak and put the word out. The response was great! Then we thought “Wow, we better figure out how to pay for this!” So we put together a dinner dance and raised enough to cover the conference expenses. It was exciting to make something like that happen and we learned a lot, and quickly!

It has been said that our mistakes can be our greatest teachers. Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?

In early 2002, my husband and I went to a local NET patient support group. It was on a Thursday evening at 6 PM and the location was not easy to get to. There were 4 or 5 people there and we had a good meeting. When it was over, I pulled the group leader aside and said, “What do you think if we did a meeting on the weekend, at a location near a railway station more centrally located on Long Island?” She said it sounded good and she would get back to me. We got in the car and headed home. When we got there and listened to our messages, there was one from the group leader saying, “Hey, I really can’t do this anymore but didn’t have the heart to quit, but I think you could do it. Congratulations, you’re the new group leader!” So, by opening my mouth I got thrown into a situation that I didn’t have any experience in. Actually, though, it was a blessing in disguise and put me on a path to patient advocacy. I think the lesson learned was that you never know when something might happen that will change your life.

Can you describe how you or your organization is making a significant social impact?

The programs we run are born from the necessity of educating patients and increasing the awareness of neuroendocrine cancer. The doctors are true NET specialists and their presentations are the first time many patients and caregivers understand that there are treatments for them. These events change their lives.

It’s the same with our hotline, support group chapters, free information packs and other programs. They inform patients and make them better self advocates. These programs make a immediate and direct positive impact on many people.

Can you tell us a story about a particular individual who was impacted or helped by your cause?

It’s all about helping other NET patients. At one of our conferences, I met a pancreatic NET patient who had already been through a large surgery called a Whipple and had been told that she was ‘cured.’ Well, neuroendocrine tumors are different than other tumors, and I shared with her that this was something that should be followed for the rest of her life. Of course, it was hard to convince her of that, so over the next 5 or 6 months I contacted her monthly to ask her if she had her follow up scans. At one point she said, “All right, I will schedule a scan just so you know I’m cured.” The scan came back with a very large and aggressive NET that would have killed her if she hadn’t gotten it surgically removed. I was so grateful to save her life. That is what makes patient advocacy so interesting and important.

Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?

1. The government cannot solve all our problems. We must step up and be the change we’re asking for in many cases.

2. Government can work to remove the financial roadblocks to care. Once diagnosed it is hard for patients to have treatment approved.

3. Community can participate and raise awareness of the disease.

How do you define “Leadership”? Can you explain what you mean or give an example?

We lead people by understanding exactly what they are going through. Then we make them part of the family. I like this quote by Eleanor Roosevelt: “To handle yourself, use your head; to handle others, use your heart.” You can’t fake caring.

What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.

1. How to plan and manage the growing need for our programs with a very small staff

2. How to get the word out to the people you want to help

3. Where to get the funding for your programs- institutional donors, grants, etc.

4. Ways to get skilled pro bono assistance

5. Tools for managing relationships with clients, other stakeholders

Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?

“Strive not to be a success, but rather to be of value.” ~ Albert Einstein

“Accept responsibility for your life. Know that it is you who will get you where you want to go, no one else.” ~ Les Brown

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” ~ Maya Angelou

“Build what you want to see in the world.” ~ Jack Dorsey

My greatest life lesson has been that life can change in a second. This is why it’s important to always live your best possible life and to do what you can for others. Niki Taylor

I’ve learned that no matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow. Maya Angelou

How can our readers further follow your work online?

Please check out our website at There you will find lots of resources to help you on your journey; a glossary of NET terms, videos from NET experts, a list of upcoming events, podcasts, blogs and more all made so patients can learn more and become better advocates for their care.

This was very meaningful, thank you so much. We wish you only continued success on your great work!

Social Impact Heroes: Why & How Maryann Wahmann of Neuroendocrine Cancer Awareness Network Is… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.