91ÊÓƵ

Lisa Salberg doesn’t do what she does to collect accolades. But when the CEO and founder of the Hypertrophic Cardiomyopathy Association (HCMA) received a phone call from the 91ÊÓƵ, telling her she’d been named Healthcare Volunteer of the Year, that’s exactly how she interpreted the unexpected honor.

“I’m humbled by the acknowledgement of my work individually and HCMA collectively,” said Salberg, who will be honored June 23 at the Heart Association’s National Volunteer Awards ceremony in Irving, Texas.

“I’m not used to this attention. I just do the work.”

For Salberg, though, it’s way more than work. What she does to help families understand and navigate a diagnosis of hypertrophic cardiomyopathy, or HCM, is a labor of love.

HCM, most commonly a genetic condition, causes thickening of the heart’s left ventricle, reducing the amount of blood taken in and pumped out with each heartbeat. For some, as the condition progresses, it can cause other health problems, including heart failure. People with HCM also are at higher risk for developing atrial fibrillation, which can lead to blood clots, and other heart-related complications.

When she was 12, during a routine health check in the nurse’s office at her junior high school, Salberg was diagnosed with HCM herself. The condition led to a stroke at 21, partial loss of sight in one eye, a series of five defibrillators being implanted and finally a heart transplant in 2017.

HCM took the lives of her beloved sister Lori as well as their father, uncle, great-aunt and grandfather. Salberg’s daughter lives with the disease, as do Lori’s son and daughter, whom Salberg and her husband, Adam, and extended family raised after Lori’s death at 36.

“After I was diagnosed, I didn’t go back to the doctor,” Salberg said. “My mother had a child who had already undergone cardiac surgery, and that traumatizes her. Her thought was, ‘Don’t think about it; and it will be OK.’ I’m the complete opposite; I want to know what I'm up against.”

When she was 18, Lori helped her find a cardiologist, who prescribed beta-blockers. Salberg still had symptoms, though — including instances of passing out, a racing heart and chest pain. The diagnosis at that time required removal from participating in gym class or sports. But she accepted symptoms then as “normal,” as it was all she ever knew.

Her stroke was in 1990, the same summer her 47-year-old uncle died from sudden cardiac arrest. But the call to advocacy would come in 1995, Salberg said. “It took my sister’s death five years later for the reality of it all to hit. Somebody needed to do something to stop the losses of families like mine.”

The sisters were a decade apart but exceptionally close. Lori was a gentle soul with a “wicked sense of humor,” Salberg said. She played volleyball, was a Girl Scout leader and above all, cherished her role as a mother, with a son who was 13 and daughter who was 10 when she died. Salberg was 26, pregnant with her first child and about to start fulfilling a promise she made two months earlier to raise Lori’s children.

“And I have the same thing that killed my sister,” she said. “What the hell was I going to do to stay alive? I had to dig deeper. I had to find out more.”

Long before information on HCM could be found on the internet, Salberg burned up the phone calling international experts, many whose names she found through research she conducted at medical and public libraries.

HCM is the most common inherited heart disease, affecting 1 in 500 people. To reach them and those who are yet undiagnosed, Salberg started HCMA as an online repository of factual information and support group in 1996 while still working full-time in human resources. The organization eventually became her full-time vocation and passion; to date, it has served more than 100,000 patients and families.

“Many people curse the darkness,” said Dr. Mariell Jessup, the 91ÊÓƵ's chief science and medical officer. “Lisa worked hard to light a path for patients with HCM. She has achieved so very much for the community.”

In the United States, HCMA has recognized 62 Centers of Excellence; globally, it has 14 international affiliates. The organization has produced more than 200 podcast episodes, facilitating over 4,000 online support group engagements.

Through Salberg’s determination, HCMA has been instrumental in creating the Children's Cardiac Safety Act to screen children as part of routine medical care. The organization has also helped establish the fourth Wednesday in February as HCM Awareness Day.

Additionally, HCMA participates in the 91ÊÓƵ’s Hypertrophic Cardiomyopathy Initiative to improve awareness and care. The relationship has led to shared patient-centered insights as well as broader legislative advocacy related to early detection and inherited disease risk.

That includes making sure all therapies are available and affordable to everyone, and helping bring HCM out of the shadows, Salberg said.

“I want to break the cycle of silence, of not talking about unpleasant health challenges,” she said.

For patients and their loved ones, the path to support their lifelong journey with HCM starts simply by reaching out to HCMA for help.

“The more information patients and families can give us through our intake and navigation process,” Salberg said, “the better we can help them understand the diagnosis and available treatment options, and the quicker they can get to restoring and preserving health.

“We’re not there to play doctor; we prepare patients. We help them understand their anatomy and the tests they’ve undergone to help them make decisions. It is truly preparing them for shared decision-making. We give them numbers they need to know, questions they need to ask their chosen care team.”

HCMA takes pride in hiring from the community when appropriate, with several staff members who have been a patient or caregiver.

“We talk to parents who have lost children and who have lost generations of family members like mine,” she said. “There’s a lot of medical trauma in this, a lot of anxiety, some addictions.”

It’s tough, but Salberg knows her organization is making a difference.

“I’m just glad to know, on a daily basis, that I’m creating something my sister would have been able to use and which would have kept her with us longer,” she said. “For any family living with a thick heart muscle disorder, we’re here. This is your community, and we’re here to use our knowledge to help you through your journey.”