One family’s story sparked this movement. But it’s about all of us now.

I lost my father to something we didn’t even know ran in our family.

Hereditary ATTR amyloidosis (V122I) is a potentially life-threatening genetic condition that can affect the heart, nerves, and more. The V122I variant is especially important in Black families, yet many people have never even heard of it.

My dad carried the gene.
His grandfather and uncle died suddenly too.
But no one connected the dots because we didn’t know.

Six years after his diagnosis, he was gone.

Then I found out: I carry the same gene.

Even with years of experience working in healthcare and research spaces, and after losing my father to a hereditary condition, I still had to work through anxiety and push for testing, explain the condition to my routine doctors, and figure out many of the next steps on my own.

That’s why I created #hATTRNextGen®.

This isn’t just my story. It’s a mission born from loss, love, and the will to help other families know more, sooner.

Too many families, especially in overlooked communities, are diagnosed late or may not recognize that seemingly separate health concerns could be connected.

Why?

Because family health history may be incomplete.

Because hereditary ATTR is still unfamiliar to many people, including some healthcare professionals.

Because we often don’t know what questions to ask until the information becomes personal.

#hATTRNextGen® exists to help change that.

To raise awareness.

To encourage family conversations.

To create tools that reflect our families, communities, and lived experiences.

Through culturally rooted storytelling, education, community outreach, and social media, the goal is simple: help more people recognize hereditary risk and know what questions to ask.

“If you believe in something, Lizbeth,” my father used to say, “you’ve got to be willing to put your name on it, or it doesn’t mean anything.”

So I’m putting my name on this.

And if this work means something to you, you can help me keep it going.

What your support helps make possible

#hATTRNextGen® has been independently created and primarily self-funded.

Voluntary support helps offset the real costs of continuing this work, including:

Creating accessible digital and print educational materials
Printing resources for community outreach and awareness events
Producing educational and awareness content for social media
Working with creatives when specialized design or production support is needed
Maintaining the website and other tools used to make resources available
Developing new ways to help families begin conversations about hereditary ATTR and family health history

I do not currently draw income from #hATTRNextGen®.

This is personal. This is purpose.

I’m building what my father and our family did not have: more opportunities to recognize the signs, understand hereditary risk, ask questions, and find reliable information earlier.

Every level of support helps

There is no required amount and no expectation.

Whether someone contributes $10, $25, $50, or another amount, that support helps offset the costs of keeping #hATTRNextGen® resources and outreach moving forward.

Just as important, financial support does not influence the direction or educational content of #hATTRNextGen®.

Our stories deserve to be told through the lens of the people and families living them. We know our communities, we know what gets missed, and WE can help build what we need.

#hATTRNextGen® remains independently led, and supporters do not receive editorial control, influence over educational content, or authority over the direction of the initiative.

Why it matters

This has never been about building the biggest organization.

It is about making information easier to find, helping families start conversations earlier, and reaching people who may otherwise never hear about hereditary ATTR until it directly affects someone they love.

One voice can create a ripple.

More informed families can create change across generations.

We can’t change what our families did not know.

But we can help make sure the next generation knows more.

Let’s fuel this fire.

Let’s honor those we’ve lost.

Let’s protect those still here.

Let’s move as a village.

If even one person changes the course of their health journey because awareness helped them ask a question sooner, then a piece of me begins to heal.

That’s my mission.

So Signed,

Erin Elizabeth “Lizbeth” Ealy Poyant
Founder, #hATTRNextGen®

#hATTRNextGen® is an independent, patient-led education and awareness initiative and is not a 501(c)(3) charitable organization. Contributions are not tax-deductible charitable donations.

Fuel the Fire: Support #hATTRNextGen®

Supporting independent, patient-led hereditary ATTR education and awareness in Black families across generations.