Awareness starts at home. ❤️ Grateful to bring #hATTRNextGen ® to New Bedford and be part of the We Care Community Health Fair. This has always been about family, community, culture, and making hereditary amyloidosis information feel more familiar and easier to talk about. Know your root

🧡 D is for Details. Sometimes it’s not one big clue. It’s the little things a family mentions over the years. “He had carpal tunnel.” “Heart problems run in our family.” “Your grandmother always complained about numbness.” On their own, they may not seem connected. Together, they can

Wait… you didn’t know we had a website? If you’re looking to explore a little more, visit www.hattrnextgen.org for our stories, conversation starters and hereditary amyloidosis awareness rooted in family, culture and community. 🧡 #hATTRNextGen #HereditaryAmyloidosis #V122I #FamilyH

🧩 Some early clues are easier to overlook than others. Can you unscramble these three words? Hint: This condition has been associated with ATTR amyloidosis and may appear before the disease is recognized. Take your best guess before checking the comments. Then come back and share your answ

MWhen people hear the word awareness, they often think it means knowing a disease exists. I think it’s more than that. Awareness is paying attention. It’s noticing that several people in your family had heart problems. It’s remembering who had carpal tunnel syndrome, unexplained numbnes

People often ask why trust in healthcare and research can be difficult in the Black community. Yes, history matters. But so do the experiences many of us are having today. It’s being overlooked. It’s not being listened to. It’s feeling like you have to fight to be taken seriously. As

One thing I’ve learned on this journey is that education doesn’t stop after a diagnosis. Whether you’re living with ATTR amyloidosis, caring for someone you love, or simply trying to understand your family’s history, there are organizations that regularly offer free virtual and in-person educati

🇺🇸 Born during America’s Bicentennial. Reflecting during America250. Those of us born in 1976, myself included, entered the world as America celebrated its 200th birthday. Fifty years later, as many of us celebrate turning 50, our nation celebrates 250 years. That perspective has me thinking

When I was considering genetic testing for hereditary ATTR amyloidosis, I was anxious. I was around the same age my father likely began experiencing symptoms, and I wasn’t sure what any of it meant. During that time, Dr. John Berk shared something I’ve never forgotten: “Your father may hav

New in Stories & Voices ❤️ Father’s Day may have passed, but I’ve been reflecting on a memory that still makes me smile. A father-daughter dance. A favorite scripture. A legacy that continues. In this personal reflection, I share the story behind one of my favorite memories with my d

Why am I standing like this in the middle of downtown, in broad daylight? Because I can. That may seem like a simple thing. But for many of my ancestors, it wasn’t. Juneteenth is a reminder that freedom was delayed, hard fought, and paid for by generations whose names we may never know. Pe

One of the things I enjoy most about attending conferences is seeing people from different organizations and healthcare systems come together to learn from one another. Last weekend, I had the opportunity to attend the Cardiac Amyloidosis: Emerging Trends and Future Directions Conference in Atla

🌿 Root Check Lately, I’ve been hearing the phrase “generational curses” a lot. Maybe it’s just me, but I’ve never been completely comfortable with that idea. When I hear the word curse, I think of something dark. Something intentionally placed on a family. Something that suggests the peopl

There was a time when I thought there was a right way to make an impact. A right way to advocate. A right way to tell a story. A right way to show up. What I’m learning is that purpose doesn’t always look the way we expect it to. Sometimes the most meaningful things happen when we stop t

When we talk about family history, it’s easy to focus only on genetics. But we inherit so much more than that. How we process information. How we learn. How we cope. How we communicate. How we celebrate. How we overcome challenges. So much of who we are is shaped by the people who cam

So now that I have your attention, let’s go a little deeper. Learning that a family member has a hereditary condition can feel heavy. It can leave you wondering what questions to ask, what information matters, and what it could mean for the rest of the family. The goal isn’t to overwhelm a lo

When a family member shares important health news, it can leave you with more questions than answers. You may feel nervous. You may not know what to ask. That’s okay. Take a moment to listen and learn. Ask questions respectfully. Remember, they may still be processing the news themselves.

Some of us weren’t raised to talk about our health. We were taught to push through, keep moving, and handle our business. But there comes a point when speaking up isn’t complaining. It’s taking responsibility. If something doesn’t feel right, ask questions. Keep asking until you get ans

Looking back on my own healthcare experiences, both acute and chronic, I have had providers who listened deeply, investigated thoroughly, and helped move my care forward in meaningful ways. I have also had moments where I realized I needed to advocate strongly for myself so I did not get lost in