Each October, for more than 20 years—(though with a brief pandemic time-out)—we’ve headed to the Mayo Clinic in Rochester, Minnesota to meet the new class of WomenHeart Champions: women with heart disease from across the nation who are using their stories to advocate for millions of American women living with or at risk of heart disease.
Since their founding 1999, WomenHeart has provided training at their Science & Leadership Symposium to more than 1,000 Champions, assembling a “boots-on-the-ground” corps of women who have helped change the narrative around women’s heart health.
In honor of WomenHeart’s 25th anniversary, here’s a brief history of how the nation’s first (and still) only patient-centered organization focused on women and heart disease came to be—and how we’ve been lucky enough to witness this history.
From isolation to connection
In 1998, three women, strangers from different parts of the country, were introduced when they were featured in a magazine article about women and heart disease.
All three had had heart attacks while in their 40s. All three had experienced misdiagnosis, inadequate treatment and social isolation. All three were shocked at how little information about women’s heart disease was available to them. And all three shared a sense that something had to be done.
So, in 1999, they formed WomenHeart: The National Coalition for Women with Heart Disease.
Their goal? To build an organization that would become the leading voice for American women living with or at risk of heart disease.
Their strategy? Put the personal stories of women with heart disease front and center.
They knew that women’s stories, once amplified, had the power to help change the heart-disease narrative from “a man’s disease” to “the #1 killer of women”—and they set out to build a nationwide team of advocates to do just that.
“I don’t want just some typical speaker training.”
To help launch their new organization, the founders turned to Dr. Sharonne Hayes, Professor of Cardiovascular Medicine at Mayo Clinic who, that same year, had established the Mayo’s Women’s Heart Clinic, one of the first of its kind.
Nancy Loving, one of the three WomenHeart founders, brought to Dr. Hayes the idea of providing advocacy training to women with heart disease. Dr. Hayes offered to host an annual WomenHeart Science & Leadership Symposium at Mayo and provide faculty and substantial in-kind resources. Together, the founders and Dr. Hayes determined the content: The Symposium would offer women with heart disease the opportunity to access critical information from the nation’s leading cardiology experts, gain skills on how to educate and empower other women to take charge of their heart health . . . and learn how to tell their personal stories as WomenHeart Champions.
And that’s when we were fortunate to get a call from Nancy, asking for training assistance for the inaugural class of Champions. “We don’t want just some typical speaker training and we don’t want just a ‘storytelling workshop,’” she told us. “We need these women to tell their personal stories powerfully and save lives. We need to get their stories out there. Everywhere.”
We got it. So, in October of 2002, we drove south an hour or so from Minneapolis to Rochester and met the first class of 60 WomenHeart Champions.
We were blown away by the stories we heard—stories of heart attacks misdiagnosed as indigestion, stories of busy women not recognizing critical symptoms because their focus was elsewhere (say, on family or career) or because they didn’t experience the classic male symptoms, stories of women having to demand an EKG when emergency room staff dismissed their complaints.
Clearly, there was a lot of work to be done. These women knew it, and they had living proof.
Congratulations, WomenHeart
Since then, the WomenHeart Champions have told their stories and delivered critical information in health clubs and churches, in hospitals and medical schools, at the White House, on Oprah and more.
Each year, when we’ve made the drive to the Mayo (which is a lovely fall drive . . . except in 2006, when it snowed) or meet Champions in the new virtual symposium, we think of the hundreds of Champions we’ve been fortunate to meet, and of the important work they’ve done.
We’re proud to be a part of the WomenHeart support team and we remain inspired by the organization’s commitment to leveraging the power of stories from lived experience to truly make a difference.
About WomenHeart WomenHeart is the leading voice for the millions of American women living with or at risk of heart disease www.womenheart.org
