Awareness Begins at Home

I was born in Brockton, Massachusetts, but New Bedford is where I spent much of my childhood. It is part of my roots.

So when I talk about bringing hereditary amyloidosis awareness to “my community,” I do not mean that in an abstract way. I mean places like New Bedford. I mean the families, neighborhoods, churches, cookouts, conversations, and people who helped shape me.

That is why being part of the We Care Community Health Fair this weekend felt a little different.

Yes, I was there to talk about hereditary ATTR amyloidosis. I brought educational materials, family-history information, and the story that started much of this work for me.

But some of the most meaningful moments had very little to do with amyloidosis.

People came over and talked about their health.

They talked about what they were worried about. They talked about their parents. They talked about conditions that run in their families. They talked about learning to ask their doctors questions, getting second opinions, trying to understand test results, and advocating for the people they love.

Not every story was hereditary amyloidosis. Every story did not need to be.

What mattered to me was hearing my people talk about health, family, and what they are doing to take care of themselves and one another.

That is part of awareness too.

I think sometimes we imagine advocacy has to be big. A huge audience. A microphone. Thousands of followers. A national platform.

But awareness can start much closer to home.

It can be one conversation between relatives. It can be asking your mother what happened to her father. It can be telling a cousin about something you learned.

It can be sitting across a table from someone in your hometown and saying, “Have you ever heard of this?”

You do not always need the loudest voice.

Sometimes you just have to be willing to talk to your neighbor.

For me, #hATTRNextGen® has always been rooted in family and community. My father’s story brought hereditary amyloidosis into my life, but what I have learned since then is something I want to carry back to the people and places that helped shape mine.

Because I believe awareness begins with family. And truly, awareness begins at home.