Blog: Former journalist becomes heart disease advocate after her mom’s health scare

Marilyn Serafini, executive director of Heart Valve Voice US

With National Heart Valve Disease Awareness Day right around the corner, we interviewed Marilyn Serafini, executive director of Heart Valve Voice US. Read about Marilyn’s journey from a well-known reporter covering national health care policy to a heart valve disease patient educator.

Before her mom’s valve replacement surgery, Marilyn Serafini’s awareness of heart valve disease was limited—and she was not alone. Although as many as 11 million Americans are impacted by heart valve disease, a recent survey found that three in four adults know little to nothing about heart valve disease.

“I knew it existed, but I didn’t hear much about it. It was kind of going under the radar, despite the fact that the prevalence is significant,” Marilyn said.

Now, as executive director of Heart Valve Voice US, Marilyn works to increase awareness of heart valve disease among the patients and medical communities. Just one month after her mother had an aortic valve replacement, Marilyn received a call from Alliance for Aging Research President and CEO Sue Peschin, who serves on the board of Heart Valve Voice US. In what Marilyn describes as a great coincidence, Sue asked her if she would be interested in the job of executive director of Heart Valve Voice US, a patient advocacy organization for heart valve disease.

“I wanted to do something that made a difference,” Marilyn said. “I decided to take on this job in hopes that I could make the situation better.”

Marilyn’s experience in the world of health care extends much further back, long before she joined Heart Valve Voice US.

Marilyn planned initially to become an English teacher but became enthralled by the world of journalism after an internship at a Baltimore television station. From there, she decided to pursue her master’s degree in journalism and public policy from American University.

“I was really inspired by the prospect of being able to be on the front line of information and translating news and information in a helpful way to people,” Marilyn said.

For the next few decades, Marilyn did just that as a journalist, working as a senior reporter for CongressDaily (now National Journal Daily), the health care and welfare correspondent for National Journal, and the Robin Toner Distinguished Fellow and Senior Correspondent for Kaiser Health News. She covered a variety of issues, but eventually focused on health care.

When she began to write about health care exclusively, many people told her not to do it, claiming she was going to be “bored stiff.” She didn’t listen and says there has never been a boring moment.

“I felt I have never once been bored by health care. It affects every single person. People feel very strongly about their health care—the cost, access, quality. It is an issue that is easy to feel passionate about,” Marilyn said.

These issues—cost, access, quality—were common themes Marilyn covered during two decades as a reporter.

As the executive director of Heart Valve Voice US, Marilyn uses many of the same research and writing skills she used as a journalist to serve as an advocate for heart valve disease awareness. In 2019, she hopes to continue to raise awareness, both among patients and medical providers.

“If just one person out there hears our PSA, or sees our social media posts, and sees that they may have symptoms and goes to their doctor and asks, “Is it possible I have valve disease?” then we’ve done our job,” Marilyn said.

Heart Valve Voice US is a nonprofit organization that advocates for detection, support, and treatment for people with heart valve disease, giving a voice to these individuals. Heart Valve Voice is a partner of the National Heart Valve Disease Awareness Day campaign, which is led by the Alliance for Aging Research.

Learn more about Marilyn and Heart Valve Voice US by visiting www.heartvalvevoice-us.org/who-we-are/.