Family Heart Foundation Brings Awareness to Hidden Heart Risk Factor

High lipoprotein(a), or Lp(a), is an under-recognized but serious genetic risk factor for cardiovascular disease (CVD). Katherine Wilemon, founder and CEO of the Family Heart Foundation, explained that people with high Lp(a) are born with elevated levels and live with that risk throughout their lives.

Over time, Lp(a) contributes to plaque buildup in arteries, making them narrower and more unstable. This can lead to heart attacks, strokes, peripheral artery disease or the need for stents or open-heart surgery. Beyond blockages, high Lp(a) also triggers inflammation and increases blood clotting, all of which heighten the risk of a cardiovascular event — independent of other risk factors.

To address this hidden danger, the Family Heart Foundation created the Flag, Identify, Network and Deliver (FIND) Lp(a) initiative. Using a machine learning algorithm, the program helps health systems identify patients who already have CVD and are most likely to also have high Lp(a). Importantly, the foundation itself does not access patient data — instead, health systems receive a list of high-risk individuals so they can proactively invite them for screening. Traditionally, health systems wait for patients to seek care, but this program flips that model, reaching out before another event occurs. This early intervention could be lifesaving, especially since fewer than 5% of people with high Lp(a) have ever been screened.

One barrier to awareness has been the lack of therapies. While lowering LDL cholesterol can help reduce some of the risk, there are no approved treatments that specifically target Lp(a). This has led to limited screening and low awareness, even among cardiologists. However, several promising therapies are now in clinical trials.

Wilemon stressed that it often takes decades for scientific discoveries to become standard care, which is why accelerating screening and education now is essential. Roughly 20% of the population is estimated to have high Lp(a), and it may be a key contributor to why CVD remains the leading cause of death in the U.S.

While awaiting new therapies, people with high Lp(a) can take action today: keep LDL cholesterol levels as low as possible, avoid smoking, stay active and maintain heart-healthy habits. In severe cases, apheresis — similar to dialysis — may be an option. Just as important is education, which empowers patients to join clinical trials, explore treatment options and advocate for themselves in the health care system.

The Family Heart Foundation also provides resources for patients and families, including a moderated online community, volunteer opportunities, free screenings and care navigation support.

Wilemon, who founded the organization after her own heart attack at age 39, emphasized that connection and education are crucial. “In other words, don't give up. There are lots of opportunities to empower yourself.”