Living with FH and Heart Disease - a blog

08/10/2025

If you or someone you know has HoFH (Homozygous Familial Hypercholesterolemia) you might wonder what this diagnosis means for the future. What’s it really like to live with this condition? What treatment options are available and what are the experts working on? Are there people out there in the same situation?

The Family Heart Foundation HoFH Gathering 2025 in October is the place to learn, gain perspective and make friends who can be an extended support system that is so crucial to living your best life with this disease.

Here are just a few things that I gained by attending last year’s HoFH Gathering:

-- I met doctors and other researchers that explained how my disease is different from other elevated cholesterol conditions. This has allowed me to work with my doctors and tailor the right treatment for me.
-- I got a front-row seat in the conversation about what new treatments are already available, as well as what is still in research. Knowledge is power, and it is so important to know all our options for a condition that is often hard to manage.
-- Perhaps the most important gift that this gathering has offered me is the opportunity to meet people with my condition and to feel like I am part of a family. There is immeasurable value in connecting with others who understand your life and the challenges that come with our unique situation. People like me shared their own journeys. You feel less alone and more powerful when you build human connectedness through common experiences.

Link to register: familyheart.org/hofh-gathering-2025

Welcome to the 2025 HoFH Gathering! Thank you for registering to join us for this special event!

08/06/2025

What new science makes possible and why the Family Heart Foundation is so important. A study that started with them. -

BOSTON — A novel machine learning algorithm has potential to improve detection and treatment of individuals with familial hypercholesterolemia, according to a new study. Spencer V. Carter, MD, clinical assistant professor of medicine in the division of cardiology at UT Southwestern Medical Cen...

07/26/2025

One of the most frustrating things about managing a disease using medicine is being caught in the middle of the battle between pharmacies and insurance companies. It adds insult to injury -

I have had a long, sinuous, adventuresome path with PCSK9 inhibitor drugs. A complete unknown when my FH was diagnosed 42 years ago, a drea...

07/18/2025

One last stop in The Mitten State, at the Motown Museum. I was so eager to visit this historic place where legendary music figures like Diana Ross, Stevie Wonder, The Supremes and Jackson 5 made their mark! But the tickets were sold out for the day. Bummer! It was good to just be on the same grounds.
Remember that our goes on till August 16. You can donate to a team, or just give a one-time donation to the Family Heart Foundation. - https://familyheart.org/walk-to-save-more-hearts
To quote my cardiologist: "You must do all the advocating you can do to ensure this research happens for FH! There has never been a bigger need for donations and awareness than now!". Thank you!

07/17/2025

Even with FH, a clean and healthy lifestyle helps, even when to blame are not necessarily our life choices, but our genes.
Did you know that Henry Ford was a vegetarian and he wrote a book about how smoking was detrimental to one's health, even at the beginning of 20th century when smoking was ubiquitous?
We visited the Henry Ford Museum and the adjacent Greenfield Village on our visit to Detroit, MI.
It was an intensely hot day, and we spent more time indoors than out, but the museum did not disappoint. A true testimony of human ingenuity and drive.
- https://familyheart.org/walk-to-save-more-hearts

07/16/2025

Novartis is sponsoring two clinical research studies for children living with homozygous familial hypercholesterolemia (HoFH) or heterozygous familial hypercholesterolemia (HeFH) – ORION-19 and ORION-20. These studies will evaluate the safety, efficacy and tolerability of inclisiran* in children diagnosed with HoFH and HeFH.

Travel to the site may be reimbursed for patient and caregiver.

*Inclisiran is being studied for new uses for which the efficacy and safety have not been established. There is no guarantee it will become commercially available for the uses under investigation.

For more information on these studies, please visit
www.familyheart.org/pediatric-studies-orion19-orion20

07/15/2025

In Kalamazoo, MI, I stopped by a local legend - Sweetwater's Donut Mill - apparently the donuts are to die for, but alas, no vegan ones for me! 🙁 - - there is still time to support our Walk to Save More Hearts - going on till August 10, 2025 - https://familyheart.org/walk-to-save-more-hearts

07/15/2025

We are lucky to have options for treatment -

“When one medicine doesn’t work, try another. Never give up.” Family Heart Ambassador, Alina. W, shares her journey managing FH—facing setbacks, making breakthroughs, and finally reaching her cholesterol goal. Read her inspiring story: https://familyheart.org/its-a-numbers-and-guessing-game

07/13/2025

The Family Heart Foundation advocates for individuals like me, with Familial Hypercholesterolemia (FH), or elevated LP(a). Both genetic disorders cause increased risk of heart attacks and strokes earlier in life. Every year, we organize the “Walk to save more hearts” campaign to raise funds to help this great cause.

⭐️ One in 250 people has FH and one in 5 people has elevated LP(a). ⭐️

Instead of walking, I am traveling for this wonderful cause, and getting exposure to our race wherever I go. This is in the Raleigh airport, taking off to a new destination. If you know my story and can contribute, I will be forever grateful! Help us save more hearts! Thank you! - https://familyheart.org/walk-to-save-more-hearts

07/08/2025

Routine scans can reveal more than numbers—they offer peace of mind and early insight.
In her latest post, Family Heart Ambassador, Alina W. shares what her annual carotid ultrasound showed and why it’s a key part of managing homozygous familial hypercholesterolemia ( ). Her story is a reminder of the power of regular monitoring and community support.
Read blog: https://familyheart.org/yearly-ultrasound-new-numbers

06/14/2025

Part of the FH and heart-disease journey is to familiarize yourself with a life peppered by "routine" doctors’ appointments. -

Part of the FH and heart-disease journey is to familiarize yourself with a life peppered by doctors’ appointments. And yes, that is not a ty...

05/04/2025

Today is Homozygous FH awareness day! This is the more severe and rare form of FH that leads to cardiovascular disease earlier in life. Know your family history and your cholesterol numbers! I am one of the 'lucky' few. Stay healthy and well, fellow FH Warriors!

Today is ! Homozygous Familial Hypercholesterolemia ( ) is the rare and most severe form of familial hypercholesterolemia (FH), causing extremely high LDL from birth. This genetic condition can lead to early and severe heart disease — even in childhood. Early diagnosis and treatment can save lives.

Learn more about HoFH! https://familyheart.org/hofh