A Letter From Daniela: What Cure VCP Disease Has Meant to Me

Daniela Tamayo Jaramillo is a PhD candidate in Peter Shen's lab and a recipient of this year's poster award at the Cure VCP conference. After the summit, she wrote the following letter to the Cure VCP Disease community. We're sharing it, with her permission, as a window into what this community means to the people doing science.

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Dear Cure VCP Disease community,

I wanted to share a personal perspective — one that includes my role as a researcher, but that also reflects on the deeper impact Cure VCP Disease has had on me beyond scientific training.

First, thank you. Thank you for everything that's been built here. It reaches far beyond what most people probably realize. This community has built legacy, hope, purpose, and inspiration. It's been a driving force that brings people together in a way I've never seen anywhere else in science.

Looking back, my path to VCP research feels like it was always meant to bring me here. I first heard about VCP in 2019, my last year of undergrad, during a summer research program in Sharon Rozovsky's group in Delaware. I found VCP biology interesting, but what really hooked me that summer was structural biology itself. When I was applying to graduate programs, I found Peter's lab simply because I was looking for a cryo-EM lab — I had no intention of working on VCP again. During rotations, I was randomly assigned to a ribosome project, and I fell in love with it. When it came time to choose a lab, I told Peter I'd join, but that I didn't want to work on VCP — I wanted to work on ribosomes. That's where I started. Little did I know life had other plans.

One day I was eating lunch at a desk outside Peter's office when he came out of a meeting with collaborators from the University of Utah's Therapeutics Accelerator Hub. He asked if I'd be interested in working on a VCP inhibitor project. What began as an unexpected opportunity became one of the most meaningful parts of my PhD. Less than a year in, Peter was invited to the Cure VCP Disease meeting in Pasadena, and he brought everyone in the lab working on VCP — including me. I thought it would be a normal conference. It was my first conference as a graduate student, and it changed my perspective completely.

I could no longer see my project as just an interesting biological question. I saw it as the faces of the patients I'd met. It gave my work a sense of purpose I hadn't felt before, and it strengthened my sense of responsibility toward doing research that actually matters. I'd never seen a meeting like that one — everyone in the same room, building progress together. It let me fully appreciate the real-world impact of this field, and how collaborative and committed the VCP disease community is. I've never seen anything like it in science. 

Earlier this year, I published my first paper on that VCP inhibitor project. It was bittersweet — I was happy to share it, but sad I couldn't keep going with it. I told Peter I didn't want to work on VCP when I started. A few years later, VCP had changed my life for the better. So when I heard you were organizing another Cure VCP Disease meeting, I got genuinely excited and told Peter right away. I also insisted — more than once — that our two new postdocs attend. I knew what that first conference had done for my career, and I hoped it would do the same for them.

I had three reasons for coming to the 2026 conference: to share our new paper with the community so others could build on it; to go back and learn, to see the patients again, because I genuinely wanted to be there, even if it turned out to be my last chance; and to decide whether I wanted to keep doing VCP research for my postdoc and beyond.

Once again, I was moved by what happened at that meeting. It's magical. This year I came with a more mature understanding of everything around me — the science, the researchers, the disease, the families, life itself. In the two years between conferences, my own life had changed too. I was diagnosed with a chronic illness that has no cure and little known biology behind it. A year after that, a close member of my family was diagnosed with early-onset Alzheimer's disease.

I came to this year's meeting not only as a trainee who'd found meaning in her research, but as someone living with an incurable illness, and someone whose family has been touched by a neurodegenerative disease. Those experiences don't let me understand what it means to live with VCP disease — of course they don't — but they gave me a much deeper appreciation for the uncertainty patients and families carry every day, and a stronger sense of urgency about the work we do.

As a researcher, I feel blessed to have found Cure VCP Disease and this field. I want to be part of this community in whatever way my talents allow — to do science in a place that cares deeply, where colleagues collaborate instead of competing. As a patient, and as a family member of someone with a different neurodegenerative disease, I can appreciate what's been built here even more. I may never fully understand what it's like to have VCP disease in my family, but I understand the pain of facing the unknown, and I've seen how community and hope can change people's lives.

I left the Cure VCP Disease 2026 Summit with one reflection I'm carrying forward: I want the talents I've been given as a scientist to go toward work that makes a difference for real people — not just on paper, in a grant application, but for someone. I may not find the cure for my family member’s Alzheimer, or for my own condition. But if I can do something for someone else — maybe for this community — that's what I want to do.

So thank you, Cure VCP Disease community, for creating this space. Thank you for showing me, as a scientist in training, that science can be done with the heart in mind. Thank you for showing me, as a patient and a family member, how things should be — and the power of not leaving people alone. What you've built is remarkable. It has changed my career, and it's shaping the kind of scientist and the kind of person I hope to become. I know it has changed the lives of many others too.

With gratitude,

Daniela Tamayo Jaramillo