The FH Foundation is a patient-centered non-profit dedicated to research, advocacy, and education of all forms of familial hypercholesterolemia



40 Years and Counting – My Life with HoFH

If you were to check out my Facebook page, I probably look like a pretty typical 41-year-old woman. I married my high school sweetheart, and in July we will celebrate 20 years of marriage. I have two beautiful children, one boy and one girl, between whose activities I am constantly shuttling back and forth. I have … Read More


One Second

One Second.

It’s true what they say. It only takes one second for your entire life to change. Everything is different. Uncertainty is the new normal. The day our six-year-old daughter was diagnosed with Homozygous Familial Hypercholesterolemia, a rare disease that can lead to heart disease, even in childhood, … Read More


Living with Familial Hypercholesterolemia

What’s Your Normal?

I have Familial Hypercholesterolemia. I inherited the gene from my father, who inherited it from his mother, who carried our French Canadian FH gene. FH is a genetic disorder that causes very high LDL cholesterol from birth, unrelated to diet and exercise. For me, knowing I have ridiculously … Read More


Impacting the Future of FH Care: Joining a Clinical Trial for Familial Hypercholesterolemia

I really didn’t know how to go about finding out about clinical trials, nor had I really given the idea much thought. But after seeing a news story about a new drug coming out for FH, I decided to ask my cardiologist if he knew anything about that new drug. He did some research on my behalf, and came back with information … Read More


Missed Opportunities in FH Treatment

Pretreatment LDL 375… Check
Tendon xanthomas… Check
Corneal arcus… Check
Parent with a heart attack at 36… Check
Genetic testing with a positive finding of a pathogenic FH mutation… Check

No matter how you slice it, under any set of criteria, I have FH – a genetic mutation … Read More