The FH Foundation Is Now the Family Heart Foundation, Celebrating a Decade of Success

Expanded Mission Focused on Saving Generations of Families from Heart Disease & Strokes

PASADENA, Calif.–(BUSINESS WIRE)–Following a decade of success as the Familial Hypercholesterolemia Foundation, the organization recently expanded its mission and changed its name to the Family Heart Foundation. With a broadened focus, the Family Heart Foundation will drive awareness about, advance scientific understanding of, and empower patients and their families living with familial hypercholesterolemia (FH) and now, elevated lipoprotein(a) — also known as Lp(a).

“The Family Heart Foundation is creating solutions to persistent gaps in healthcare for individuals at highest risk of early cardiovascular events and, ultimately, premature death,” said Katherine Wilemon, founder and CEO, Family Heart Foundation. “Our projects and services are rooted in the patient’s needs and empowered by cutting-edge applications of real-world data and machine learning technology to transform the way people living with genetic drivers of heart disease and stroke receive care.”

Katherine had a heart attack at the age of 39, a diagnosis of FH at 41 and, years later, found out she also had elevated levels of Lp(a). At the time of her diagnosis, she realized that she was not the only one who had experienced a missed diagnosis and early heart disease. She knew that more research, education, and awareness was needed at every level of the healthcare system in order to effect real change. This led her to create the FH Foundation in 2011.

For the past 10 years, the Foundation has worked with partners, advocates, scientists and others in the medical community to serve the needs of individuals and families at high risk for heart disease due to FH, including homozygous familial hypercholesterolemia (HoFH), the rare and most severe form of FH. The Foundation has been a driver of innovative research to improve identification and care of people with inherited lipid disorders, leveraging unique data assets, medical expertise, and patient insights.

“Though the FH Foundation is only 10 years old, it has accomplished a tremendous amount for the people we serve, especially affected families,” said Josh Knowles, MD, assistant professor of Medicine at Stanford Health Care, and Chief Research Advisor, Family Heart Foundation. “The Family Heart Foundation has remained nimble, which has allowed us to innovate across many spheres and has translated into significant gains in education, awareness, advocacy, and support to help prevent heart attacks and strokes caused by elevated Lp(a) and FH.”

About elevated Lipoprotein(a)

Lipoprotein(a) – sometimes referred to as lipoprotein “little a” – is an important genetic risk factor for heart disease and stroke. High Lp(a) levels are associated with higher risk for heart attacks, aortic stenosis, and stroke. One in 5 people have high levels of Lp(a), greater than 50 mg/dL or 125 nmol/L. Learn more here.

About Familial Hypercholesterolemia

Familial Hypercholesterolemia (FH) is a common life-threatening genetic condition that causes high LDL cholesterol from birth. Untreated, FH can lead to early heart disease. One in 250 people have FH, though most are not diagnosed. Learn more here.

About the Family Heart Foundation

The Family Heart Foundation is a non-profit research and advocacy organization. The Foundation is a pioneer in the application of real-world evidence, patient-driven advocacy, and multi-stakeholder education to help prevent heart attacks and strokes caused by familial hypercholesterolemia and elevated lipoprotein(a), two common genetic disorders that have an impact across generations. The Family Heart Foundation conducts innovative research to break down barriers to diagnosis and management of inherited lipid disorders; educates patients, providers, and policy makers; advocates for change; and provides hope and support for families impacted by heart disease and stroke caused by FH, HoFH, and high Lp(a). The organization was founded in 2011 as the FH Foundation. For more information, visit and follow us on Twitter, Facebook, Instagram and LinkedIn.


Jackie Aker –