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ECAN Is Taking On Esophageal Cancer with Awareness and Action

 

This month, Full Sail Media is honored to highlight ECAN, the Esophageal Cancer Action Network, and its founder and CEO Mindy Mintz Mordecai, in another inspiring story in our Changemakers Calendar series.

Today Full Sail Media we’re following her journey from the loss of her husband to powerful advocacy against esophageal cancer. Esophageal cancer, often a silent killer linked to acid reflux, remains one of the deadliest cancers due to its late diagnosis and the lack of public awareness about its connection to a common condition. 

Our changemaker turned her grief into a mission to educate others, advocate for better diagnostic tools, and ultimately save lives. In the following, we chat about what she went through, from witnessing the consequences of overlooked symptoms to leading a national awareness movement. 

Join us as we share a lightly edited version of our conversation, offering insights into the complexities of esophageal cancer, the critical need for early detection, and the power of advocacy in bringing about change.

How did you get started with the Esophageal Cancer Action Network?

17 years ago this month, my husband was diagnosed with stage 3 esophageal cancer. Our kids at the time were eight and 11. To be frank with you, I knew I had an esophagus, but I knew nothing about the cancer. But boy did I learn. My husband was diagnosed on April 16th of 2007, and he passed away on March 27th of 2008. He did not even survive a year, which I’ve learned is not that uncommon for this disease. 

The thing that I also learned while my husband was in treatment was that the disease that he had had been caused by acid reflux or reflux disease. We had no idea that he had reflux disease and certainly had no idea that it could kill you. The only thing he did was at night he would lie down and choke in the middle of the night while he was sleeping. He would choke and then sometimes it would wake me up. 

Other than that, he had no other symptoms of heartburn or of reflux. He didn’t have heartburn. He didn’t have anything that you normally think of as reflux. And so, as we watched him die this terrible death. My two children have no father as they are going through these important years of their lives. I was really angry that no one was warning us. 

I looked around to see if there was anybody who was doing this, and no one thought it was their job. And so, I thought, we need to tell people. When my kids were nine and 12, my daughter was about to have her bat mitzvah. Kids preparing for a bat mitzvah are supposed to do a project to give back. My daughter was a dancer, so she hosted this event that we called Dance for a Cure, where we offered dance classes all day long. We held it in Towson university and the whole point was to help people understand that heartburn can cause cancer. After it was over, people said, let’s do it again next year. And I was exhausted. My husband just died six weeks earlier and I really thought I didn’t need this, but I did see that we were able to garner media attention and I thought, well, that’s going to help save some lives. We did it the second time and I looked around and said it’s not enough to just do it in Baltimore.

So that’s when we set out to begin the Esophageal Cancer Action Network. We are a national organization raising awareness around the country, and this month is Esophageal Cancer Awareness Month. 

This is our 15th Esophageal Cancer Awareness Month in this country. ECAN started this because it didn’t exist. And it’s exciting to us now because lots and lots of companies and individuals pay attention and they observe it, and they share our messaging.

How has ECAN worked to raise that awareness on a national level?

We filed a petition with the FDA to try to get warning labels placed on over-the-counter heartburn remedies. In conjunction with that effort, we hired Ipsos to do a poll and what we found out is that only 14% of Americans are aware that reflux disease can lead to cancer.

We’re spending billions every year on heartburn remedies, but 86% of those people have no idea that they could be at risk. We felt that the awareness message was important, but we also felt like researchers needed more funding so that we could find a tool that could figure out if you were at risk without having that sedated procedure that we were not going to be able to do for everybody.

How has ECAN had an impact on the way esophageal cancer is researched? 

The first thing that we did as an organization besides starting Esophageal Cancer Awareness Month was we learned that the National Cancer Institute (NCI) was going to map the genomes of 20 different cancers – and we weren’t on their list. 

The folks at NCI know me because I was banging on the door and saying we’re the fastest increase in cancer in the country. How can we not be on your list? 

Oh, it’s too hard to get the tissue samples, they said. So, we went to the doctors on my board. And asked can we get them the tissue samples? Then we pledged to get the tissue samples. , NCI  said, oh, that’s really nice, but we don’t have the money to start the project now.

At that point we had $40,000 in the bank. I was working full time for free and I said, well, how much do you need to start it? They said we need half a million dollars. I went back to the board, and I said look, half a million dollars is a lot of money to us, but it is not a lot of money in the big scheme of things and I believe we could raise that money. We should tell NCI that if they’ll put us on the list to map the genome Esophageal Cancer, we’ll raise that money. We had already identified some wealthy people who’ve been affected by the disease. And they are not likely to give money to us as a little organization, but they would definitely want to fund research that’s being conducted by the National Cancer Institute. 

Then we held our breath and six weeks later I got a phone call from one of the researchers who was heading up the gastric cancer project who said you’re going to  be getting a call inviting you to serve on the Disease Working Group of the esophageal cancer pilot project of The Cancer Genome Atlas (TCGA). I was jumping up and down. Never give up on the idea that you can make a difference.  We’re like the little engine that could, the teeny, tiny organization that got the NCI to do something they weren’t planning to do. 

The end result was that Esophageal Cancer patients were included in studies that led to the approval of immunotherapy for EC patients, one of the first new therapies our patients had access to in decades.

We wouldn’t have been part of any of those studies if The Cancer Genome Atlas hadn’t found the connection between this particular type of esophageal cancer and gastric cancer.

They were funding gastric cancer studies, but they weren’t funding esophageal cancer studies. So, once they found that connection, we started to be included in all these other research trials. That’s how immunotherapy became available to esophageal cancer patients. 

In our discussions, we’d heard about some celebrity advocates that you guys have over the years, one of which was Humphrey Bogart’s son. How did that arrangement come about? 

That was the same year that we did the work with NCI on the TCGA in 2011. We reached out to the estate of Humphrey Bogart. The folks there, as you might imagine, are contacted by lots of people for their support and they said they wanted to go somewhere where they could actually make a difference. They knew they could make a difference with our small but important effort. Stephen Bogart came to Baltimore, and we had a contract with Maryland Public Television to e produce some nice public service announcements that we have shared for all these years. When we wanted to honor the people who made a difference in the lives of esophageal cancer patients, they allowed us to call our award the Bogart Awards. We thought it was perfect to give an award that featured the biggest star of film to those people who had made such an important difference.

In 2015, we did an event that we called No Laughing Matter and we were fortunate enough to get Jeff Foxworthy to do a benefit concert for us. But we didn’t just want to do a benefit concert. Leading up to Foxworthy’s performance, we hosted   comedy club competitions in six cities around the country.  In each of those cities, the audiences voted for the best comic in Houston or New York or Boston or wherever it was.  Then we placed videos of all of the winning performances on our YouTube channel and let the public decide who was the best.  Then we flew in the winner as the opening act for Jeff Foxworthy. Jeff Foxworthy also did a nice public service announcement for us. I asked him if he would do a redneck joke for us.

He starts out by saying, “if you eat a bacon-wrapped chili dog for breakfast, you might be a redneck. But if you have heartburn and don’t tell your doctor, you might be risking your life.”

Are there initiatives that people in the community can get involved with or that they could get involved with if they were interested in supporting the organization from their individual level?

One of the most important things that we want people to do is outreach to their elected officials.  We make it easy for them to do with our online form at BeatEC.org that automatically sends messages to their elected officials.  You go to our website, and we have a form where you just put in your address. You can write a note to your legislator, in addition to the pre-written message we provide, hit the button, and it gets to them.

This year, we started the ECAN Fight Club – a special group of folks who have made a commitment to ECAN’s future by making a donation every month.  We like to say it’s a way to make sure there’s always somebody in the ring to fight Esophageal Cancer.

We have a project we call “Stacy’s Army”, named for one of our most dedicated supporters who survived for seven years with Stage IV Esophageal Cancer. When people join Stacy’s Army, we provide the “ammo” they need to raise awareness in their community. It could be something as simple as distributing educational materials to primary care offices to getting your local airport to allow us to place banners for Esophageal Cancer Awareness Month.

Millions of dollars in research come as a result of our advocacy.  Over the past three years, we’ve added more than $15 million to the federal budget for Esophageal Cancer research – and we know millions more will be awarded this year.

But that’s not where our advocacy goals end. We’re hoping to educate legislators to the point that, once we’ve got more of these minimally invasive detection devices on the market, Congress will direct the CDC to start raising awareness about the link between reflux and Esophageal Cancer. The CDC has lots of money to do life-saving awareness raising and not only do they have money they have lots of experience. That’s one of the things we’d like to see happen down the road. My guess is that within five years we’ll have at least three or four minimally-invasive testing devices that are readily available. Right now, we’re fighting for insurance coverage.

For Esophageal Cancer Awareness Month, we offer lots of opportunities for people to do a lot or a little. On our website, we have a page where we give people all kinds of suggestions of things that can be done to raise awareness. We’ve got buildings all over the country and in fact in Canada as well, lighting up in periwinkle blue because that’s the awareness color for Esophageal Cancer. And so, we’ve got people requesting that buildings all over the country light up in periwinkle blue for EC Awareness Month. We provide guidance in securing gubernatorial proclamations for EC Awareness Month. We offer a text-a-day service that sends an easily shareable awareness message that supporters can post in their social media and send in emails. We sell lawn signs that say “April is Esophageal Cancer Awareness Month; Heartburn can cause Cancer. Get Checked! And provide the URL (Get-Checked.org) to get our free downloadable guide for patients. We host a virtual 5K called Steps to Save Lives and we have had thousands of folks join us for that event every April since 2021.

We have opportunities for people to host their own events, even offer an “Event in a Box” in our online store called BuyPeriwinkle.org, as well as a platform on our website where if you want to host an event and raise money, the platform’s there for you to set up your own event to do whatever you want. 

How You Can Support ECAN’s Mission

Before we conclude, some exciting news in support of Esophageal Cancer Awareness Month: for those of you walking through Times Square, keep your head up. ECAN will have videos about EC Awareness Month and the link between reflux and cancer on the 7-story NASDAQ video screen in Times Square four times  per hour during the week of April 22nd.

Finally, Mindy’s story is a reminder of the difference one person’s resolve can make in the face of adversity. Her work underscores the importance of early detection, education, and advocacy in combating this deadly disease.

For those inspired by her journey and looking to support the cause, learn more, or get involved, visit ECAN.org. Together, we can contribute to a future where nobody has to die of esophageal cancer.