Sixteen years ago, our family lost my dad to transthyretin amyloid cardiomyopathy (ATTR-CM). At the time, we didn’t even realize how much the world didn’t know about this disease. There were no real treatments. No infusions. No medications to slow it down. There was simply a diagnosis and the quiet understanding that we were about to watch someone we loved slowly slip away.
ATTR didn’t take my dad all at once. It was slower and, in many ways, crueler than that. It stole from him piece by piece — his strength, his stamina, his independence. One day he could do something simple, and the next day he couldn’t. Tasks most of us never think twice about became exhausting challenges. Back then, we weren’t choosing between care options or weighing treatment plans. There were no options. We showed up to appointments, asked questions no one could answer and prayed for time we knew we probably wouldn’t get.
We loved him the best we could. And then we lost him.
For a long time, that felt like the end of the story.
But sixteen years later, I find myself walking a path that looks painfully familiar — because now I’m the one living with ATTR.
The difference is that my story looks very different from my dad’s. Today, I receive treatment. I take medications designed to slow progression and protect my heart and nerves. My doctors talk about preserving function and buying time. There is research. There is innovation. There is something we never had back then: hope.
And I am incredibly grateful for that hope. Truly.
But if I’m honest, that gratitude is often tangled up with grief. There are days during treatment when I think, this should have been his. He should have had these options. He should have had this chance. Every step forward in medicine feels like both a gift and a reminder of what came too late for him.
Our family’s journey doesn’t stop with me. My sister carries the gene as well. She isn’t even symptomatic yet, and she recently started a clinical trial to help prevent the disease from progressing. The fact that she can fight something before it even fully shows up still amazes me. That kind of opportunity simply didn’t exist sixteen years ago.
That progress didn’t happen by accident. It happened because patients shared their stories. Because families joined research studies. Because people refused to accept “there’s nothing we can do” as the final answer.
But here’s what I’ve learned: Treatment is not the same as a cure.
Yes, we have options now. Yes, we have more time and more tools. But we still live with this disease every day. We still schedule life around appointments and tests. We still notice every new symptom and wonder what it means. Slower progression is still progression. Managed is not healed.
That’s exactly why we cannot afford to get comfortable.
It would be easy to look at today’s treatments and say, “This is good enough.” But good enough wasn’t good enough for my dad. And it isn’t good enough for the families being diagnosed right now or the children who may inherit this gene in the future.
They deserve more than maintenance. They deserve a cure.
For me, advocacy isn’t optional — it’s personal. Every treatment I accept, every study my sister joins, every time I share our story is part of continuing the fight my dad never got to finish. Sometimes I think of it like a relay race. He ran the hardest stretch with no support and no solutions. When he couldn’t run anymore, he passed the baton to us.
Now it’s our turn to keep moving forward.
We speak up. We participate in research. We push for awareness. We fight for better care and better answers. Because one day, I want another family to hear the word ATTR and also hear the words: “There’s a cure.”
Sixteen years later, I don’t just remember my dad. I carry his legacy every time I choose to keep fighting. His battle didn’t end — it lives on in us. And we’re not stopping until no daughter, no sister and no family has to pick up where he left off.
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