A message from ECAN’s President, CEO and Founder Mindy Mintz Mordecai about the ten-year anniversary of Esophageal Cancer Awareness Month.
Eleven years ago, I held my husband, rocking him in my arms, drenching us both with my tears as he took his final breath. When they lowered his casket into the ground, I wanted to jump in. I could not envision life without Monte. Scripture says, “They that sow in tears will reap with shouts of joy.” But like Monte’s reassuring presence, joy had disappeared.
Still, our two little girls needed a mother who could push forward even while bereft, suffering the loss of the amazing, pure-hearted center of our lives.
The one-on-one battle with cancer was over for us, but fighting Esophageal Cancer on a broader scale was already ingrained in our lives. It was our elder daughter Mara who came up with the idea of the dance event that became the Cancer Dancer. We hosted the first Day of Dance just weeks after we lost Monte. And our younger daughter Maya had a polished elevator pitch to warn everyone we met about the risks posed by heartburn. I was fanatical about media outreach to help others in our local community understand the link between reflux and cancer. But I knew that this rapidly increasing cancer was striking so many more families across the nation than I could ever reach from Baltimore by myself.
Hoping to find like-minded folks who I could join to tackle this problem, I reached out to the only national Esophageal Cancer non-profit organization I knew about. I was excited to make the call, saying I wanted to help raise awareness about the link between reflux and cancer all across the country! But I was told the kind of help I offered was not needed – or even wanted.
I was crestfallen and confused. I thought I had offered something of value: years of award-winning broadcasting experience and a background as a lawyer and advocate working with non-profits. I didn’t understand. Friends who were more familiar with the association suggested that if I could just wait a year until the group elected a new Board of Directors, they might be more receptive.
But I was impatient. I knew that every day, dozens of Americans were losing their lives to Esophageal Cancer – a disease that could and should be prevented. I knew that every day, parents around the country were enduring the hardest task I’ve ever faced: telling their kids that mom or dad won’t be here to guide them to adulthood. And I knew that every day, too many children were shattered by news no child should receive.
Let a another year of days like that go by while doing nothing? That was unacceptable to me.
My rational mind knew that the last thing I needed to do was start a non-profit organization while raising my nine and twelve year old daughters all alone.
But the urgency I felt was overwhelming.
I kept envisioning more and more devastated little faces like our daughters’ and imagining the ache of my broken heart infecting families that had no idea they were even at risk. I felt like I knew something that everyone should know. And because of my family’s tragedy, I understood how important it was to share that message with the world. I didn’t think it could wait.
Leap of Faith
Though it seems a little crazy when I look back, ten years ago I didn’t feel like this was a choice – it was an imperative. So in order to support my family, I took out a home equity line of credit. That let me put all of my energies during the day into launching a movement dedicated to saving the lives of people like Monte. I worked full time for two years without a paycheck. But I was genuinely thrilled by the opportunity to plant a seed, praying it would take root and change outcomes for patients who still had a chance. My gratitude to everyone who made that happen is impossible to quantify.
We were so lucky that the doctors from Johns Hopkins who cared for my husband along with local business leaders, families affected by Esophageal Cancer and other Baltimore physicians were willing to join our Board of Directors and help us launch this new movement. At the Board’s first meeting, we adopted a name that reflected what we set out to do: take action to save the lives of those at risk for Esophageal Cancer, collaborating with anyone who shares a passion for our goals.
The Esophageal Cancer Action Network was born.
We were so fortunate that a small, but mighty – and growing – group of supporters believed in our mission. Nothing accomplished over the past ten years could have happened without all of you. Today, our community feels more like a family to me than a group of strangers bound by a terrible twist of fate. I’m proud to be associated with you and all that you have made possible over the years.
With the energy and generosity of our community, we started Esophageal Cancer Awareness Month in April 2009. We convinced the National Cancer Institute to change course and include Esophageal Cancer in their ground-breaking genome mapping project known as TCGA: The Cancer Genome Atlas. We filed a petition with the Food & Drug Administration seeking cancer warning labels on over-the-counter heartburn remedies.
We helped families across the country who wanted to raise awareness and host events in their own communities – and hosted some of our own. In 2012, we were honored when former Under Secretary of State Ellen Tauscher, an Esophageal Cancer survivor, spoke at the nation’s first Gala for EC Advocacy – ECAN’s Cancer Dancer!
We attracted support from the Estate of Humphrey Bogart including Bogie’s son Stephen and from comedian Jeff Foxworthy. They have both headlined ECAN events and starred in professionally produced public service announcements that share our life-saving message in venues across the nation.
But ECAN is not just about advocacy and public outreach. Everything we do is about supporting positive outcomes for patients. That’s why assuring they have access to solid information is a priority for ECAN. Our free, downloadable Guide for Patients produced with input from more than 100 physicians from around the nation, provides the basics about the link between reflux and cancer. But more than that, we tirelessly seek out the latest studies, staying up-to-date and communicating with researchers and industry leaders. Then we share what we learn with patients and families through multiple channels of communication. As a result, ECAN has become a trusted source for information about Esophageal Cancer prevention, detection, and treatment for patients across the country – and in other nations, too.
Progress for Patients
Many of you have joined our quest to gain increased Esophageal Cancer research funding on Capitol Hill. With your support, we raised the funds needed to launch a campaign to get Esophageal Cancer included in a multi-million dollar cancer research program controlled by Congress.
Last year, Congress appropriated $90 million for that fund – but researchers in just 15 cancers are eligible to apply. Today, Esophageal Cancer isn’t on that list. But we are working to change that right now. If we are successful in adding Esophageal Cancer to the program, it could mean more than $5.5 million for Esophageal Cancer research next year – and then year after year for many years to come – as long as we convince Congress to keep Esophageal Cancer on the list.
Even in my wildest fantasies, ECAN could never raise millions of dollars in a year. But with your support, we now have the chance to leverage the investment you’ve made and access many millions for Esophageal Cancer research every year for many years to come.
Your voice makes a difference. I’m not sure we will get this chance again if we don’t prevail this year. Please don’t let all of the resources and energy we’ve invested in this campaign go to waste. The action you take today could make a life-saving difference for years to come.
Those of us who have been down the grueling path that is Esophageal Cancer understand too well why this matters. Scientific discovery that springs from research is the only way we will get the screening tools, early detection methods, effective treatments and, ultimately, the cureswe need.
If voters like us won’t speak up to say we care about this, why would lawmakers act?
So far, about 20 Congressmen stand in support of adding Esophageal Cancer to the Program.
Next, we turn our attention to the Senate.
Please – take just one minute to make your Senators aware of your support for Esophageal Cancer research.
Our online platform makes it quick and easy. And it costs nothing but a minute of your time.
And when you are done, ask everyone you know to do the same thing. We need all the support we can muster.
After everything so many of us have been through, it is natural to feel exhausted, even powerless. It happens to me, too.
But when I see such passion in the words and actions of members of our ECAN family, it lifts me up.
We share a higher purpose. It spurs us to strive for the day when families faced with the risk of Esophageal Cancer need not be fearful. We can’t give up on that goal – if only for the sake of our own beloved EC patients – and especially for the thousands we don’t even know yet who come to us each year seeking a reason for hope .
Medical research has dramatically improved survival in many other cancers. Now it’s Esophageal Cancer’s turn: Let’s be the Spark for Progress that keeps Hope Burning Bright.
Eleven years ago, through my tears I could not see a life without Monte. With those bountiful tears flowed a perseverance triggered by anger and loss. The upside was that, thanks to everyone in the ECAN family, the little seed that compelled me to start this movement got the nourishment it needed to sprout – and thrive!
Many times over the past ten years I have worried that this sapling might not grow strong – or even survive at all. We have no guarantees. But I do have faith that the combined energy and goodwill of all of the people toiling in these fields will bring about the life-saving changes our patients need. I like to believe that day is not so far off. And when it happens, I think we will all be ready to “reap with shouts of joy”.