Over the past 10 years, we have heard from thousands of people who have heart disease or had a stroke caused by an inherited cholesterol disorder. Unfortunately, they did not learn of their genetic condition until it was too late. The damage was done. They were told that heart disease or high cholesterol “runs in the family” but were never given the name of the genetic cause that leads to so much heartache across generations. We believe families deserve a diagnosis so they can get the care they deserve. That is why we have launched this campaign. We hope you will join us to help reach people who have never heard of FH or elevated Lipoprotein(a).

When we started out as the FH Foundation in 2011, we were focused on FH. One in 250 people have FH, but this diagnosis is missed even when the signs are clear. Only a small fraction of people with FH are diagnosed and treated to lower their LDL cholesterol to guideline-recommended levels. This is crucial to preventing a heart attack, the need for stents or bypass, or even an early death from cardiovascular disease. While there are effective treatments to dramatically reduce the risk for these devastating outcomes, people with FH or a combination of other genes causing severely elevated LDL cholesterol are not getting the care they need in time. We are missing this opportunity to prevent the #1 cause of death and disease in the U.S. and around the world – heart disease. We set out to change that and, while we all have a long way to go, we have made progress over the past 10 years.

By 2021 we knew we could take this progress, and the tools and resources we built for FH, and apply them to help more people. We sought to include those living with another genetic cholesterol disorder, elevated Lipoprotein(a). Elevated Lipoprotein(a) affects 1 in 5 people around the world and causes early cardiovascular disease. But less than 1% of people in the U.S. have ever had their Lipoprotein(a) measured with a simple blood test. We know that if someone has elevated Lipoprotein(a) it is especially important to manage all other cardiovascular risk factors, including lowering LDL cholesterol. We also know that it is important to pay attention to heart disease and stroke symptoms in a person with elevated Lipoprotein(a), even if they seem “too young.” But we miss the opportunity to understand people’s cardiovascular risk if we don’t even test their Lipoprotein(a). In the near future we hope that the research being done on therapies for elevated Lipoprotein(a) will lead to safe and effective treatments to lower risk, just like we have for those with FH.