Rooted in Our Stories

Built for our families. Focused on hereditary amyloidosis.

For the Next Generation…

#hATTRNextGen® is a community awareness initiative created to encourage conversations about hereditary ATTR amyloidosis, particularly the V122I gene variant that disproportionately affects many Black American families with West African ancestry.

Highlights

Learning Doesn’t Have to Be Boring

I am a firm believer that learning doesn’t have to be complicated.

Who says health education has to always feel like homework?

Test what you know about hereditary amyloidosis with the #hATTRNextGen® crossword puzzle. It is a simple, interactive way to learn some of the words, concepts, and clues that come up when we talk about hATTR.

Learn a little. Challenge yourself. Maybe even share it with family

Try the Crossword

Show Up. Show Out. Raise Awareness through Art.

A scattered collection of puzzle pieces with varied earthy, brown, and beige tones, some with marbled or textured patterns, laid out on a light-colored surface.

Awareness Begins at Home

I was born in Brockton, Massachusetts but New Bedford is where I spent much of my childhood. It is one of the places that shaped me and one of the communities I think about when I say, “my people.”

Being part of the We Care Community Health Fair recently reminded me that awareness does not always require the loudest voice. Sometimes it starts by being willing to talk to your neighbor, listen to someone’s story, and share what you know.

Not every story I heard that day was about hereditary amyloidosis. That was not the point.

The point was community.

Read More

Smiling woman sitting at a booth with informational signs, a framed photo, and a vase of white flowers, under a tent during daytime.

Close-up of hands with manicured nails, one with a zebra print, a red ribbon in a loop, and the text 'Polished for a Purpose' at the bottom.

Show Up. Show Out. Raise Awareness through Art.

SHOW UP IN BURGUNDY

For Our Families.

For Our Future.

Erin Ealy-Poyant, Founder

Jessie L. Ealy, Father

I built #hATTRNextGen® in honor of my late father.

He lost his life to the V122I variant of hereditary amyloidosis in 2020.

Learning I was a carrier of this variant made me realize that too many Black families may have been affected by this disease or at risk without the information, cultural grounding, or community support that could have changed everything.

This space exists so our community can learn earlier, advocate louder, and protect the future with clarity and confidence.

This is legacy work, rooted in culture, truth, faith and love.

Red awareness ribbon on a black background.

Have you thought about your legacy? I have.

Proverbs 13:22 reminds us that inheritance is about more than money. It's the values we teach, the traditions we keep, the stories we share, and the family history we pass forward.

We are more than our genes. We are our culture, our community, and our legacy.

Knowing your family history matters.

Where Science

Meets the Soul

In our community, often living with illness or the possibility of illness is not only a medical journey, but also an emotional and spiritual one for many families. This space highlights conversations, reflections, and stories that explore the intersection of faith, family legacy, and health advocacy.

A Moment for Mind and Spirit

I have always loved Maya Angelou for the way she spoke about strength, faith, resilience, and the human experience.

This prayer for healing from pain, sickness, and stress offers a quiet moment of reflection for anyone carrying the emotional weight that can come with illness, caregiving, uncertainty, or simply life.

#hATTRNextGen® shares resources like this as a reminder that caring for ourselves and our families can include mind and spirit, too.

This video is shared from its publicly available YouTube source. All original content and production credit belong to the respective creator and rights holders.

Watch and take what speaks to you.

Reflections to help us stay centered, rooted, and steady.

Stay informed on what’s happening in ATTR research.

This educational webinar, created and produced by the Amyloidosis Research Consortium (ARC), provides an update on the ATTR amyloidosis clinical trial landscape and research currently underway.

#hATTRNextGen® is sharing this publicly available ARC resource as part of our mission to help families stay connected to trusted education, research updates, and resources in hereditary amyloidosis.

All educational content, expert commentary, and video production credit belong to the Amyloidosis Research Consortium and the featured presenters.

Watch the full ARC Talks webinar on ARC’s YouTube channel.

Latest knowledge for the community rooted in what we need to know.

A Word For the Journey