At HeartBridge Collective (HBC) , we support patients and caregivers alike — because rare disease is never a solo journey. It affects the whole household, the whole family, and often the same two people day after day. When a rare disease is discussed, the focus is usually on the patient. But standing right beside them is a caregiver whose physical, emotional, and mental health are also on the line. Research now confirms what families have been saying for years: the emotiona

Why good medical news can still feel scary when you’ve lived through heart failure Friday, I walked into my cardiology follow-up feeling pretty confident. I’ve been feeling really good. Like… good-good. More energy. More good days than hard ones. That stretch where you finally start to exhale and think, “Okay… maybe we’re steady.” So I expected a normal appointment. Maybe a “keep doing what you’re doing.” Maybe a small adjustment. But what I heard instead? I was not ready for

What the New Clinical Research Guidelines Mean for You Clinical research is changing. Here is what it actually feels like for you. When you’re a patient or a caregiver in a clinical trial, you don’t care about "regulatory updates" or "global compliance." You care about whether the study fits into your life. You care about whether you feel heard, safe, and respected. 👂❤️‍🩹 There is a new global guideline called ICH E6(R3) that is currently reshaping the future of research.

As a patient, I used to think success meant walking out of the hospital. Now I know success is what happens in the months and years after. This piece shares the “fine print” many of us only learn once we’re already living it. At HeartBridge Collective , we believe lived experience belongs at the center of the clinical conversation—not as an afterthought. Patients are not just study subjects. We are partners in shaping better care. Without a patient voice, the full picture is

You may remember I wrote about a scheduling " snafu " earlier this year. I wish I were writing to say things have improved. Instead, I am posting this update because the same communication problems continue to affect my clinical trial care. This isn’t just about one missed appointment or a simple mistake. It is an ongoing pattern—a systemic problem that places the burden of coordination directly on the patient.  It is creating stress that doesn’t need to exist—for me or

As this year comes to a close, I’ve been reflecting on the last 12 months of my personal life. A lot of it was heavy. A lot of it required honesty — even when I didn’t feel ready for it. If I’ve learned anything this year, it’s this: life doesn’t wait for us to feel ready. A Year That Didn’t Pause ⏳ This year, my husband Louis faced a cancer recurrence while I was dealing with my own cancer scare. There was no pause button.No moment where life slowed down so we could catch o

Our Most-Listened Episode of 2025 🌟 This episode showed up big on Spotify Wrapped — with 63% more listens than any other episode this year. And honestly, that doesn’t surprise me. Because this conversation needed to happen. ❤️ Why This Episode Matters In this roundtable episode of Heart to Heart Talk, I sat down with Azure Burrell and Katherine Waddell to talk about an issue that still doesn’t get the attention it deserves: Black women’s heart health . 🫀 Heart diseas

Proof that healing is possible, even when the journey takes longer than expected. Rachelle’s story reminds us that second chances are worth the wait.  First off, my name is Rachelle, and I'm thrilled to share my journey with you. Originally from Colorado, I now call Oregon home, and I'm grateful for the fresh start. I've always been passionate about exploring the mountains, and the views are simply breathtaking. However, it was during these adventures that I first noticed som

❤️‍🩹 A patient’s perspective from someone who lived early feasibility When you’re one of the first people to receive a new heart valve, you learn pretty quickly that innovation is both a miracle and an evolving standard of care. I was an early feasibility EVOQUE patient — part of the group whose outcomes helped shape future FDA approval. The valve saved my life. But being in that first wave also meant stepping into a space where long-term answers were still being written. Th

Some days, clinical trials remind me of show-and-tell back in kindergarten. Remember that? You didn’t just talk  about your awesome toy — you brought it in! You showed it. You let people hold it, look at it, and ask questions to really understand what made it special. Honestly… I wish clinical trials were more like that. Before anyone tries to “explain the benefits” or hands me a huge stack of papers with words I can barely pronounce, I want to see  — really see — what this t

Because sometimes, healing begins when you start believing yourself. Some stories remind us just how much strength it takes to keep showing up when answers don’t come easily.Kayla’s journey with tricuspid valve disease began long before her diagnosis had a name — and her perseverance through years of uncertainty is a powerful reminder that advocacy often starts from the heart. A devoted wife, mother, and HeartBridge Collective member, Kayla has faced more than a decade of cha

Because lived experience explains the “why” behind every statistic.   ❤️‍🩹 I can’t shake this one line that keeps echoing in my head: “Data comes alive through a real human story.”  ✨ It sounds like something you’d jot down during a meeting about “impact,” right?But honestly… that line sums up my whole life.A little humbling. A little exhausting. And every bit is true. The Two Worlds We All Move Through 🌍 Most of us bounce between two very different worlds. 1. The World of

Living through a trial taught me the truth and why patients need to be heard . I never gave clinical trials much thought. In my mind,...

This isn’t just a story about heart disease. It’s a story about hope —and how a clinical trial saved my life and gave me a brand-new...