David Fajgenbaum

“I was 22 years old when my body started to feel like it wasn’t mine anymore.

At first, it was small things. Walking up a flight of stairs felt harder than it should. My body started to swell. I remember standing there with my dad thinking, something’s not right—but I couldn’t explain it.

Over the next few weeks, everything got worse. I kept going to appointments, getting tests, waiting for answers—but no one could tell me what was happening. It felt like my body was slipping, and no one knew how to stop it.

Eventually, I got so sick that I ended up in the hospital. That’s when things got real.

My mom lives over 20 hours away in New Brunswick. When she heard how bad things were, she dropped everything. Two ferry rides. A ten-hour drive. She just needed to get to me.

I don’t remember much from that time. But she does. She remembers sleeping in hospital hallways. She remembers me being scared. She told me later that I asked her to sing to me—like she used to when I was a kid.

While I was in the hospital, she was searching for answers nonstop. Reading everything she could. Trying to piece things together. That’s when she came across something called Castleman disease.

Around that same time, my doctor—Dr. Steven Rowe—was starting to think the same thing.

I was diagnosed with idiopathic multicentric Castleman disease with TAFRO syndrome. A rare and aggressive disease where your immune system turns on your own body.

Once they figured it out, everything changed. I started treatment with siltuximab. Slowly, my body began to stabilize.
Today, I’m still on treatment. I go in for infusions every six weeks. But I’m living my life again.

What I don’t remember, my mom carries with her. And now she’s using it to help other families—working to make sure doctors can recognize this disease sooner, so someone else doesn’t have to go through what we did.

This disease didn’t just change my life. It changed ours.

It was such an honor to sit down with at the to discuss ’s mission and work!

Four years ago at is where I first shared about the dream that and I had for Every Cure and Lake Nona’s support helped us to turn that dream into a reality!

That journey made this year’s moment even more meaningful. I was deeply honored to be recognized with the Impact Award and even more surprised when my family joined me on stage to celebrate the moment together.

A huge thank you to the entire community for believing in this vision from the very beginning. We’re doing everything in our power to advance our mission of saving and improving lives by repurposing drugs for patients who need them most.