Avery’s Fight for HoFH and Familial Hypercholesterolemia

Avery has a rare disorder known as Homozygous Familial Hypercholesterolemia – HoFH – that is causing early heart disease. Familial Hypercholesterolemia (FH) is a common genetic disorder that causes extremely high LDL Cholesterol from birth. A lifetime exposure to such high levels “bad” cholesterol can lead to early, aggressive heart disease.

For most with FH, there are effective treatments available to help prevent heart disease. Early diagnosis and treatment are key. But Avery has the rare form of FH – Homozygous FH – and unfortunately, her treatment options today are very limited.

Avery fights every day while her parents hope that a cure will come soon.

Access Health: Familial Hypercholesterolemia

Access Health goes into depth of the signs and symptoms of Familial Hypercholesterolemia.

2016 FH Global Summit Speakers

A summary of all the speakers at the 2016 FH Global Summit

The Future of Specialty Drugs Part 1 

Katherine Wilemon panelist talk on the future of specialty drugs.

2015 FH Global Summit: FH at the Crossroads 

An animation on FH.

Kathy’s Journey: Finding a Path

Kathy tells her story with FH.

FH : A Story of Hope from FHFoundation on Vimeo.

A Story of Hope – The FH Foundation

18 year old Hope goes on an enlightening musical journey to explore FH (familial hypercholesterolemia) and discovers that by taking control and sticking to a few rules she can not only live a normal life but empower others to do the same.

Familial Hypercholesterolemia – The Doctors

Katherine Wilemon, Founder, President and CEO of The FH Foundation, on the television show The Doctors.

Living With HoFH – By Jonathan Karas

Jonathan Karas speaks about living with HoFH.

HoFH – Katherine Wilemon 

HoFH is the most severe form of familial hypercholesterolemia (FH).  Learn more about this genetic condition from FH Foundation founder, president, and CEO, Katherine Wilemon.

A Message About FH – Dr. Joshua Knowles, MD, PhD

Dr. Joshua Knowles, MD, PhD shares a message about Familial Hypercholesterolemia and how it affects families.

A Message About FH – Dr. Henry Ginsberg, MD

Dr. Ginsberg, MD shares his high hopes for families with Familial Hypercholesterolemia.

WVU Health Report- CASCADE Cholesterol

More than 34 million Americans suffer from high cholesterol. Familial Hypercholesterolemia is an under diagnosed form of the disease marked by extremely high cholesterol and high risk of an early heart attack. Katherine Wilemon was told she had high cholesterol at age fifteen. After suffering a heart attack at 38, doctors diagnosed her with Familial Hypercholesterolemia.

Genetics of FH Webinar – Amy Sturm, LGC

Webinar with Amy Sturm discussing the genetics of FH.

FH Global Summit 2014 – Daniel Hommes, MD, PhD

Models of success in other chronic diseases.

FH Global Summit 2014 – Kyra Bobinet, MD, MPH

Changing Patient Engagement: Increasing Adherence and Patient Engagement as Part of Lifelong Management. 

FH Global Summit 2014 – Seth J. Baum, MD

Strategy of Cascade Screening in the U.S. With/Without Genotyping (Presenting proposal on behalf of The FH Foundation).

FH Global Summit 2014 – Albert Wiegman, MD, PhD

Reverse Cascade Screening/Cascade Screening

FH Global Summit 2014 – Nadeem Qureshi, DM

Electronic Medical Record (EMR) Screening in Primary Care Practice in England

FH Global Summit 2014 – James Underberg, MD

Education, Education, Education: Differentiating Between Lifestyle – Induced High Cholesterol and Autosomal Dominant Genetic Lipid Disorders.

James Underberg, MD Speaks On Medical Community (U.S.)

Comprehensive Overview of Familial Hypercholesterolemia by Dr. Seth J. Baum, FH Foundation Board of Directors Member

This lecture gives a detailed scientific explanation of this genetic disorder, it’s diagnosis, and available treatments. It has been presented to healthcare practitioners and will be helpful for medical professionals wanting to review or learn more about FH. It also offers patients a perspective that is not usually accessible to them. It’s a must-see for anyone interested in the diagnosis and treatment of familial hypercholesterolemia (FH).

2014 ICD-10 Coordination and Maintenance Committee Meeting of familial hypercholesterolemia

The FH Foundation applies and presents the case for distinct diagnostic reimbursement code of familial hypercholesterolemia.

Joshua Knowles MD – CMO of The FH Foundation

Joshua Knowles MD is a dedicated Board member of The FH Foundation, as well as our Chief Medical Officer. In this video shot at the Stanford University Medical Center, Dr. Knowles explains the nature of FH and what implications it has for those affected.

FDA Patient Network: Bringing Your Voice to Drug and Device Approval and Safety


Homozygous Familial Hypercholesterolemia

On the Balancing Act, FH Foundation President & CEO discusses the mystery behind Homozygous Familial Hypercholesterolemia (HoFH) – the rarest, yet most severe form of FH.

Faces of FH: Brenda Gundell

Brenda Gundell found out she had FH and the journey has not been easy. Luckily, she is now treated by Mary Ann Champagne at Stanford Hospital and feels great! Hear her tell her FH story and the effort it took to get where she is now, while clinical nurse specialist Mary Ann Champagne and geneticist Joshua Knowles explain the medical side of FH.

Familial Hypercholesterolaemia (FH) – Suzanne’s story

Suzanne talks about how she found out she has familial hypercholesterolaemia (FH). She also tells us how it has affected her and her family, and what she does to reduce her blood cholesterol levels.

CDC’s Expert Commentary on Familial Hypercholesterolemia

On September 20th, 2010, CDC’s Office of Public Health Genomics (OPHG) released a new podcast about the benefits of cascade screening to identify familial hypercholesterolemia, a common genetic disorder that causes high levels of low-density lipoprotein (or LDL) cholesterol that are present from birth. Presented by Rene´e M. Ned, PhD, MMSc, health scientist from OPHG.

Familial Hypercholesterolemia – English

Discover how the common genetic disorder familial hyper- cholesterolemia (FH) increases the level of LDL (bad) choles- terol in the blood. Learn about the genetic mutations that cause FH, and see how FH leads to an accelerated rate of atherosclerosis or cholesterol buildup in the blood vessels.

Hipercolesterolemia Familiar – Spanish

Descubra como el desorden gene´tico comu´n denominado hipercolesterolemia familiar (HF) aumenta el nivel de LDL colesterol (colesterol malo) en la sangre. Aprenda sobre las mutaciones gene´ticas que causan HF y vea como la HF conduce a un proceso acelerado de aterosclerosis o acumu- lacio´n de colesterol en los vasos sangui´neos.

Understanding Cholesterol (Heart Basics #5)

Cholesterol. You hear the word a lot. But what exactly is Cholesterol, and why should you be concerned about it? Watch More Health Videos at Health

Christian – Individual Living with FH

Homozygous Familial Hypercholesterolemia is a rare and severe form of FH, which affects 1 in a million people. Christian is one of them. Watch the video or read his story here.

Wenter – Individual Living with FH

Familial Hypercholesterolemia affects about 1 in 500 individuals but only about 20% have been diagnosed. In this video you will meet a woman named Wenter who is living with FH. Wenter shares the story of her journey to a diagnosis and how her FH diagnosis has changed the life of her entire family. You will also meet one of Wenter’s partners in her care, Dr. Amit Khera. Dr Khera is part of a growing group of physicians known as Lipid Specialists. Dr. Khera shares what signs you need to be aware of and steps you need to take if you think FH may be present in your family.