To be an FH Advocate

Written By: Christian Jacobs

FH Advocate for Awareness and Family Heart Foundation Board Member

Ask 20 people what a meaningful life looks like and you’ll probably get 20 different answers, but certain answers will make virtually everyone’s list.

Most people would agree, for example, that a meaningful life includes something worth living for, maybe even worth dying for. A portion of a meaningful life would be devoted to something bigger, greater, grander than yourself. Something that inspires you, energizes you, pulls you forward – something that responds to your unique talent or touch, and ultimately makes a difference in the world around you.

A meaningful life would naturally bring more meaning, purpose, love, laughter, wonder, and adventure to your days. And, at the end of your journey you would look back on a life of significance, rather than regret – knowing in your heart that you left the world better than you found it. Knowing that you made a difference in the lives of others. Knowing that you got something wonderful out of it, and you gave something wonderful back.

That’s why I went to the FH Advocates Training Workshop in Pasadena to share my experience as an FH Advocate and an Family Heart Foundation Board member, and that’s why I commit my time to raising awareness of familial hypercholesterolemia (FH). It is my purpose and it’s what I love to do.

As someone who knows what it’s like to feel alone and isolated with no one to talk to, the weekend gave me, and others with FH, the chance to come together as family. It gave us the opportunity to not only cry together over similar experiences, but also bond together over how this experience together will help others living with FH.

This event was unique because many of the participants are affected by homozygous FH (HoFH) and we had the chance to meet on our own. It’s very rare that ten HoFH patients and caregivers are in one room together discussing how we will raise awareness and what our priorities are. We had this rare opportunity to come together to begin to build the HoFH Community. 

I can’t express how much this weekend meant to me! It definitely lit a fire under me to work even harder at raising awareness of FH in my own community as well as nationwide. I will not stop volunteering my time and effort to the Family Heart Foundation until that 10% diagnosed becomes 100%.

That’s what I will consider a meaningful life.

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