NHC Member Spotlight: Family Heart Foundation

By: Katherine Wilemon, Founder and CEO, Family Heart Foundation

The Family Heart Foundation is a non-profit research and advocacy organization dedicated to preventing and managing heart disease and stroke caused by two common but under-recognized genetic disorders that run in families, Familial Hypercholesterolemia (FH) and elevated Lipoprotein(a). Both of these inherited lipid disorders cause early cardiovascular disease. They affect adults and children of all races and ethnicities. FH affects 1 in 250 people and high Lipoprotein(a) affects 1 in 5 – that’s more than 66 million people in the United States, many of whom have both risk factors.

Unfortunately, the vast majority of people with FH and/or elevated Lipoprotein(a) are not diagnosed, missing the opportunity to protect themselves and their family members before the onset of cardiovascular disease.

The mission of the Family Heart Foundation is to save generations of families from heart disease through timely identification and improved care of familial hypercholesterolemia (FH) and elevated Lipoprotein(a).

Through researchadvocacy, and education we play a critical role in driving change, and empower families to navigate their own health.

The Family Heart Foundation began its work 10 years ago as the Familial Hypercholesterolemia (FH) Foundation. In order to reach more people with the educational, advocacy, and support resources it had developed to prevent family heart disease, the organization expanded its mission to include those with elevated Lipoprotein(a). The Foundation changed its name in December 2021 to better reflect its broader mission.

The organization is a partnership of individuals affected by FH and high Lp(a) and the medical experts who have dedicated their careers to the diagnosis and treatment of these conditions. The Foundation takes a data-driven approach, with over 30 peer-reviewed publications to date, it has established the national CASCADE FH® Registry Network of over 40 leading institutions, as well as the Family Heart Foundation National Database of over 300 million individuals affected by or evaluated for cardiovascular disease.

The Foundation is proud to work with leading institutions on federally funded grants to employ its own machine learning approach to flagging at-risk individuals, along with implementation science and behavioral economics approaches to drive better outcomes in health systems.

Like so many National Health Council (NHC) members, the Family Heart Foundation addresses the spectrum of challenges facing those living with a chronic condition.

Every day, the Family Heart Foundation supports individuals on their journey to finding the best care to treat or prevent heart disease and stroke. The organization works to raise awareness, conduct research, improve diagnosis and family screening, and advocate for timely and appropriate access to care.

Membership in the NHC has helped the Family Heart Foundation be most effective, providing a forum to join broader advocacy efforts and learn from NHC initiatives and the other members.

The Family Heart Foundation is a member of the National Health Council. For more information on membership, email membership@nhcouncil.org.