Experience

Family Heart Foundation

• United States
• Philanthropic Fundraising Services
• 1 - 100 Employee

• President and Founder

  • Dec 2011 - Present

  I have Familial Hypercholesterolemia (FH), as does one of my daughters… When I was 38, I had a heart attack. Although my high cholesterol was discovered at age 15, it was not until after the cardiac event that I was properly diagnosed with FH. Unfortunately, my experience is a common one. 90% of individuals with FH in the United States have not been accurately diagnosed. We can change this. The FH Foundation’s board of directors is composed of individuals who have FH and clinical lipid specialists dedicated to the treatment of FH. The FH Foundation just finished hosting the first-ever FH Summit in Annapolis MD. Experts from around the world were there in attendance. We have also launched the only active Familial Hypercholesterolemia Registry. This innovative registry will include information entered by affected individuals as well as IRB approved data entered by clinicians. Beginning on September 24th, on the anniversary of the second National FH Awareness Day, you can be a part of this historic registry. The registry is confidential and HIPPA-compliant and operated by Duke Clinical Research Institute. The goal is to bring this disease into focus, so that people with FH receive the proactive care they need. Join us! Become part of the solution. Show less