Katherine Wilemon is the President of The FH Foundation, a non-profit organization dedicated to raising awareness of and support for the under-diagnosed condition, Familial Hypercholesterolemia (FH).
Katherine has dedicated the past four years to spreading word of FH and the possibilities for change across the US and Europe. She hopes to make a dent in the public policy surrounding the condition and raise support for those suffering with it.
Her expertise in business development, fundraising, and public speaking have been tremendous assets in the growth of her organization.
1. Katherine, what is FH?
FH stands for Familial Hypercholesterolemia. As the name suggests, this is a disorder that runs in families. FH is a genetic disease that disrupts the liver’s ability to clear cholesterol from the blood. This results in the accumulation of LDL-cholesterol (or so called “bad cholesterol”) in the blood, leading to aggressive heart disease and heart attacks early in life.
2. Could you please tell our readers a bit about your background and how you came to set up the FH Foundation?
Unfortunately most people with FH don’t know it. 90% of people with FH in the USA remain undiagnosed and untreated. The ER turned me away two times because they didn’t think I looked like someone who could have a heart attack. When I was 38, I got admitted to the ER with symptoms of a heart attack. It turned out that this was my second one. For me this underlined one of the main problems for those who are affected by FH – the lack of awareness and appropriate treatment. This motivated me to create The FH Foundation and bring FH into focus both in the public and in the medical community.
3. Do you believe that one individual (or in this case, one foundation) can make a difference?
Yes, absolutely! My favorite quote is by Margaret Mead: “Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.” A great example is the Cystic Fibrosis Foundation – through their work they have actually prolonged the lifespan of those with CF.
4. How does the work of the FH Foundation bring about change in the world?
Our motto is “raising awareness, saving lives.” We have the challenge of finding individuals who have not been diagnosed and do not have a name for their family history of very early heart disease and high LDL-cholesterol – the #1 killer in the US.
The FH Foundation is launching a national registry to advance scientific understanding of FH, increase diagnosis rates, and encourage cascade screening of family members of those with FH, since each first-degree relative also has a 50% chance of having FH. There are good treatment options available right now and more on the horizon. One key goal is to find the 90% of people who are affected and do not know it. Every program we initiate aims to find and help those with this “invisible” disease.
5. What is your ultimate goal? What would you like to see happen over the next 5 or 10 years?
Reverse the statistics! Official data shows that there are over 650,000 people in the USA with FH, yet only 10% of them are diagnosed. We are here to find the other 90% and empower them to live longer, healthier lives.
6. What types of reactions do you receive from people when you make them aware of FH?
They are shocked by how prevalent FH is. They can’t believe they have never heard of it. They ask what the symptoms are and how it is diagnosed. A clinical diagnosis can be very simple – it’s a combination of cholesterol levels and family history of heart disease. If these two factors ring a bell, FH is a likely diagnosis. On planes, in restaurants, even at the dentist’s office, we meet people who say “maybe that’s why my father had heart surgery at 42” or “my aunt died from a heart attack at 50”.
7. What types of reactions do you get from politicians and potential donors when you talk about FH?
Donors are grateful that The FH Foundation is singularly focused on raising awareness of FH.
8. Who are some of the influential people in your life and what changes came about as a result of their influence?
My husband has been the most positive influence in my adult life. He has always encouraged me to follow my passion.
9. Please talk about some of your successes and problems you’ve yet to face, but are working on.
We have had great success in reaching out to individuals with FH. As a patient-focused organization, that is essential to us. We receive calls and emails almost daily from people who want to know more or have just been diagnosed and feel lost. It’s great to be able to provide a strong and supportive community for them. We’ve also achieved an enormous amount of progress in our initiatives in a short amount of time. We pride ourselves on innovation.
In terms of problems yet to face, I’d say the biggest obstacle is finding those that remain undiagnosed. The FH Foundation advocates for increased understanding and awareness of FH on all fronts – from the public health sector and the medical community to payers and the general public. We have a long journey ahead of us, but we’re working hard to push through the barriers to care that many patients face.
Visit Katherine’s Website At TheFHFoundation.org