Rare Leader: Katherine Wilemon, Founder and CEO, FH Foundation

The Basics
Name: Katherine Wilemon

Title: Founder and CEO

Organization: FH Foundation

Social Media Links:

Disease focus: Familial hypercholesterolemia (FH) is a common life-threatening genetic condition that causes high cholesterol. Untreated, FH leads to early heart attacks and heart disease. People with FH have a high amount of low-density lipoprotein (LDL) or so-called “bad cholesterol” due to a mutation in one of the genes that controls the way cholesterol is cleared by the body. As a result, cholesterol accumulates in the bloodstream and can ultimately build up in the walls of the arteries. Cholesterol build-up in the artery wall is called hardening of the arteries, or atherosclerosis, and can lead to problems such as heart attacks and strokes in young adults and even children.

FH is passed down through families. When one individual with FH is diagnosed, it is important that all family members are screened for FH. Treatment should begin early. Although lifestyle and diet are important factors to staying heart healthy, those two factors alone are not enough for the 34 million individuals worldwide with FH, 90% of whom are undiagnosed today.

Headquarters: Pasadena, California

How did you become involved in rare disease: I started this work a few months after I had a heart attack at the age of 39.  I had been told that I had “inherited high cholesterol” but I had not been accurately diagnosed.  Since FH is found in 1 in 250 people across all races, it is certainly not rare. Sadly, it is rarely diagnosed.

Previous career: I owned and operated a retail design business.

Education: B.S. in psychology and behavioral medicine at University of North Florida.

The Organization
Mission: As I mentioned, FH is vastly underdiagnosed.  The single biggest barrier to care for patients with FH is that those individuals do not know they have FH.  Our mission, first and foremost, is to raise awareness of FH. We accomplish that mission in several ways. The FH Foundation contributes data and research to support individuals who have familial hypercholesterolemia. We operate a national registry for FH with 40 clinical sites participating. We work closely with these clinical sites and medical systems to identify individuals with FH, including spearheading quality improvement initiatives to improve outcomes. We advocate at the policy level, with payers, and with others like the CDC to address this vulnerable population.

Strategy: We have always relied on bringing the patient’s story, the medical expertise, and the data to every stakeholder who has a vested interest in this condition for preventing heart disease. We demonstrate the costs of not identifying and treating this population in terms of the human toll and finances, as well as the opportunity for prevention. Familial hypercholesterolemia is a very hopeful story. If people are identified in childhood, they can begin treatment.  We can give people born with FH another 2 decades of life.

Funding: If you move the needle, people and organizations are happy to invest in your work.  We raise funds through sponsorships, grants, and philanthropic giving. This includes corporate entities who have therapies for reducing cholesterol and atherosclerosis and grants with our health system partners. We also receive support from grateful families and individuals impacted by FH.

What is changing at your organization in the next year: Research shows that it takes an average of 17 years for less than 20 percent of evidence-based recommendations to be integrated as a standard of care. Great science and safe and effective therapies are not enough to optimize the complex ecosystem of healthcare for people in need.  We have spent much of the last 8 years building solutions like a machine learning model to identify at-risk individuals in partnership with health systems.  We are increasingly focusing on implementation research in order to study how to accelerate the effective dissemination of best practices to improve patient outcomes.

Management Style
Management philosophy: Life is a meritocracy. I give people an opportunity to learn by doing, and I encourage everyone on the team to learn from mistakes and learn from each other.

Guiding principles for running an effective organization: No one can learn without feedback. We try to keep open lines of communication, and that includes me. I solicit a lot of feedback from my team about how I am doing. And I think grit is a key to greatness.

Best way to keep your organization relevant:  Our organization is a partnership of both individuals who are affected by this condition and physicians. We look at the gaps that no one else is focused on and that we think could be highly leveraged to make a difference. We then try to think outside the box to develop solutions that others have not thought of previously, and then we relentlessly implement those solutions.

Why do people like working with you: I am honest.  I think of honesty as a form of respect.  And I am invested in every team member.

Mentors: My mom, and Muin Khoury, the Director of Genomics at the Center for Disease Control.

On the Job

What inspires you: It is always an honor to have someone share how living with a life-threatening condition has given them resolve to make the most of every day they have.

What makes you hopeful: With the explosion of genomics, we will increasingly have the opportunity to understand who is at risk for certain conditions and help them before pathology takes hold.  I hope we will evolve from treating disease to helping people address their vulnerabilities.  It will be very important, though, to protect individuals and reward them for identifying their risks instead of punishing them with high insurance premiums or the inability to get life insurance.

Best organization decision:  We saw that professional physician membership groups and traditional “patient advocacy groups” often worked in silos.  Our best decision was to imagine  and build an organization that did not divide the world into patients and doctors.

Hardest lesson learned:  The hardest lesson learned for me is that you can’t do it all.  Saying, “No” is as important as saying “Yes.”

Toughest organizational decision: Saying “no” to flattering or intriguing opportunities that we do not have the bandwidth to pursue and execute on.  For example, we have had success as an organization in setting up a national registry, getting an international diagnostic code for familial hypercholesterolemia, making inroads into building community and awareness around FH, and starting an FH Awareness day that is now celebrated worldwide.  We were then approached by many different types of organizations or individuals who want to make a difference all over the world saying, “Would you consider setting up an affiliate?”  “Do you want to set up a registry world-wide?”   It sounds very exciting, and we do work with others globally, but much of healthcare is very local.  

Biggest missed opportunity: Not taking the time to celebrate our wins. When you are working 60-plus hours a week year after year as a small team doing big things, it is hard to stop and celebrate.

Like best about the job: I consider myself blessed to have turned my own personal health challenges into a larger opportunity to help others and challenge the status quo.

Like least about the job: Email

Pet peeve: My pet peeve is when people are more concerned about being right than learning.

First choice for a new career: If there was no other work that needed to be done, I would be a horticulturalist or gardener.

Personal Taste
Most influential book: When Breath Becomes Air by Paul Kalanithi

Favorite movie: Sound of Music

Favorite music: Willie Nelson when I cook, Neil Young when I work out, and Bach when I write.

Favorite food: Thai food

Guilty pleasure: Reading a newspaper from cover to cover.

Favorite way to spend free time: Hiking with my husband and kids.