Thinking back all the way to October, I could not let the year close before mentioning one of the greatest privileges I have been offered this year - to co-chair the Homozygous FH Gathering hosted by The Family Heart Foundation in Orlando, FL.
This was my second time attending the event (the first one premiered last year) and the first time being part of the hosting committee. To say it was an honor would be an understatement. An honor not only to represent a great organization, but also to meet amazing individuals from all walks of life and from all over the country that shared incredibly rich stories of survival and grit.
I have known I had HoFH for 42 years now. When I started this journey, I was a unicorn. No, the term did not exist back then, but I now know I was: everyone, every medical professional insisted and was amazed at "how rare" I was and how people like me just don't come around every day of the week. I remember one doctor telling me that at the time there was only one case known in Romania (where I was at the time) in children, which was a 7 year old boy. And that was it.
The fact that they told me that I would die before I'd reach 25 years of age paled in comparison to the fact that I felt so special to be so unique.
And then, many, many moons later, zooming by my original predicted "expiration" date of 25, here I am at 50, not only making it, but being in a room with not one, but 17 wonderful "rare" people, with very similar journeys, just like me. People coming from all corners of the world, just like I have, and sharing their stories and learning from one another and feeling less lonely, I am sure ...
The event focuses on creating a community for people like us, but also on educating and empowering by gathering medical professionals who come to speak about the disease, about what treatments are available and what new research is unveiling for the future.
It is a 2-day packed event which offers togetherness, hope, and knowledge to a community that otherwise feels often forgotten. I always wonder going into these events if there is anything new that I could possibly learn about this disease, about our daily struggles and about how the medical world adjusts to meet us where we are. And every single time, I do learn new things. This is a treat. And the cherry on top is meeting the individuals who struggle with the same challenges as me and feeling just as special but also less alone.
You can read my reflections here (https://familyheart.org/2025-hofh-gathering), on the Family Heart Foundation's website.
If you have or know someone who might have FH or HoFH, I encourage you to check into this event and more form this wonderful Foundation that literally saves lives.
