Member Spotlight: FH Foundation

Tuesday, September 24, 2019

Member Spotlight: The Familial Hypercholesterolemia (FH) Foundation

By: Katherine Scott, Senior Manager, Member Services and Certifications   

The FH Foundation was founded in 2012 by their CEO Katherine Wilemon who is diagnosed with Familial Hypercholesterolemia. After having a heart attack at 38, she set out to devote her life to raise awareness of FH with a goal to increase the rate of early diagnosis and encourage proactive treatment.

Familial hypercholesterolemia is a common, hereditary genetic condition that affects the body’s ability to remove LDL, or harmful cholesterol, from the bloodstream. Patients experience extremely high levels of LDL and, without proper treatment, can suffer from early heart attacks, need for stents or bypass, and premature death. FH can be diagnosed through an examination of the family history and a simple blood test. It is estimated that 1.3 million people in the U.S. have FH and 90 percent are unaware of their condition. Part of the FH Foundation’s mission is to raise enough awareness of the disorder so that screening for FH becomes more common and treatment begins early in life in order to prevent heart disease.

The FH Foundation is currently working on several programs and initiatives such as their CASCADE FH® Registry, a national FH patient registry that is designed to collect comprehensive data on patients with FH that can, in turn, increase knowledge on the disorder and spur new research. They also host the FH Global Summit annually. This event is an international gathering of medical experts, individuals with FH, and policy makers, all of whom are working toward research and treatment for FH.

The FH Foundation is proud to be a National Health Council Member. They benefit particularly from the policy efforts of the NHC. The FH Foundation has both contributed to, and benefited enormously from, the NHC’s Value Assessment work. The FH Foundation values the opportunities the NHC creates to network and learn from other leading advocacy organizations.

To learn more about the Familial Hypercholesterolemia Foundation, go to their website.