On the month she turned 39 years old, Katherine Wilemon’s world was rocked by a heart attack caused by a complete artery blockage. Shaken, she focused on her recovery.

Katherine had just started a family. “If I had been pregnant, the chances of both me and my daughter making it through the heart attack would have been less. So not long after the shock of having a heart attack, I was a new mom at home with an infant, trying to make sense of the juxtaposition of being a new parent and a heart-disease patient.”

It was the importance of family that drove Katherine to investigate the deeper physiological issues that contributed to her cardiac event. She learned that she suffered from familial hypercholesterolemia (FH), and, years later, that she also had elevated levels of Lipoprotein(a).

“It turns out that both my LDL cholesterol and Lp(a) is very high, and that I passed these mutations down to one of my daughters. It took years working in and around lipid disorders to realize the true significance of having an Lp(a) of about 200, untreated. It means that I, like millions of other people, am vulnerable to disease in the cardiovascular system, whether it is a stroke, a heart attack, or blockages in the small arteries in the legs.”

As she came to understand just how much high Lp(a) contributes to the risk of strokes and heart attacks, Katherine jumped into action. She educated herself about the dangers of elevated Lp(a), took advantage of therapies that lower her Lp(a) “some, but not enough,” and made diet and lifestyle changes, such as avoiding trans fats and getting as much exercise as possible.

“If you have high cholesterol, then keeping in the safe zone by managing risk factors is even more important,” said Katherine. “Risk factors build upon each other, so there is a lot of personal responsibility that goes into having a genetic condition. Some things you can’t change, so you have to change what you can.”

The more Katherine advocated for herself, the more she encountered an inadequate understanding of genetic conditions such as FH. Research and guidelines have taken decades to implement, leaving generations of families behind.

Always an entrepreneur, she founded the Family Heart Foundation in 2011 to increase early diagnosis and treatment. Over the years the foundation has helped establish a national research registry for FH, helped establish diagnostic codes and consensus statements for care, and providing a community for those living with the condition.

Now, the organization is expanding to drive awareness and scientific understanding of Lp(a) so that others with high levels can better protect themselves and their families.

New treatments are on the horizon and may emerge within the next five-to-10 years, in which time she encourages participating in clinical trials, taking lifestyle precautions, and keeping families close.

“The opportunity for prevention is enormous when you look at genetic conditions that cause premature heart disease,” said Katherine. “It goes beyond one individual to a family that is impacted, over generations. You can change a family history of deaths, heart attacks, or strokes in the 30s and 40s, to one of near-normal life expectancy.”