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

May is Mental Health Awareness Month. This week my daughter and I passed an empty playground during a walk and decided to swing for a while like we were kids again. Sounds small, but honestly it reminded me how much adulthood, stress, chronic illness, caregiving, work, and life in general can

I think I blinked and my trip to Portland, Oregon and the Day of Education hosted by AMCP Northwest was here and gone. Representing the Amyloidosis Research Consortium and joining conversations around ATTR-CM, health disparities, affordability, access, and the real-world patient experience. O

A few moments from my time at the Bradley Naifeh Conference. From conversations with patients and advocates to hearing the latest updates in research and care, it was a reminder of how much the amyloidosis community continues to grow. These spaces matter. The science matters. But so do the peo

Living with hereditary ATTR amyloidosis is already a lot. The cost of treatment should not make it even harder. The HealthWell Foundation Amyloidosis Fund may help eligible patients with costs related to treatments like Vyndamax/Vyndaqel, Amvuttra, Onpattro, and Wainua. Support may include c

I wanted to talk about purpose today. But it took me until the end of the day to even attempt recording this… and honestly, I almost told myself not to post it. Six years ago today, I lost my father. And through his death, I found part of my purpose. Not the pursuit of the biggest platf

Monday morning. School vacation week. The house is quiet for once. The kids are still sleeping in. Asha sits at the kitchen table in oversized sweats, a cup of tea beside a stack of bills, school papers, and unopened mail. “These bills just don’t quit…” She reaches for the calculator, the

Before we knew my father had V122I hereditary ATTR amyloidosis, we did not realize we had a “lemon” on our hands. To me, the lemon represents the hard, sour, confusing, unexpected things families may carry before they fully understand what they are facing. Sometimes signs that point to heart tro

When you spend time in outreach, awareness, and advocacy, you end up doing a lot of talking. Lately, it made me realize that sometimes the most important part is making sure we are listening. You cannot really support your family or your community without listening to them first. That appl

Sometimes self-advocacy in healthcare gets made to sound bigger than it is. It is not about having all the right medical words. It is not about diagnosing yourself. It is about being clear enough to be heard. “I’ve been tired for months.” “This swelling is not normal for me.” “My symptoms