Why We Show Up: Reflections from the AFTD Conference
- Cure VCP Disease, Inc.
- 14 minutes ago
- 3 min read
This spring, Ceci and I traveled to Seattle to represent Cure VCP Disease at the AFTD (Association for Frontotemporal Degeneration) annual Education Conference. We hosted an exhibit table for the first time, joined a panel, and spent the better part of three days in rooms full of families, clinicians, and researchers who are walking different versions of the same FTD journey that we are.
We want to share what we did there, but more than that, we want to share why it matters that we went, and why we hope more of you will join us in spaces like this.
The truth is, conferences like AFTD aren't really about the talks. They're about who shows up. They're about putting faces, names, and lived experience into the same room as the people working on the science. That's the work, and it's work that only those of us with experience of these diseases can do.
AFTD made that easier this year by designing the genetic symposium with real intention. Day one centered on the genetic causes of FTD, and VCP was part of that conversation in a way it hasn't always been. Our exhibit table gave us the chance to answer the question we hear most often, "What is VCP?", over and over, with families and researchers who hadn't heard of it before. By the end of the conference, more of them had.
Sarah Lopata, AFTD's Manager of Support Services, also invited me to join the Male Caregivers on the FTD Journey panel, where I got to speak honestly about caring for my mom, the hard parts and the parts I wouldn't trade. Together, we took part in a discussion on the intersection of ALS and FTD, hosted by Dr. Penny Dacks, AFTD's Chief Science Officer, who highlighted VCP as a gene that needs to be better understood as the field tackles ALS. That conversation matters because ALS and FTD aren't two separate diseases sitting next to each other. They're a spectrum, with shared underlying biology and overlapping clinical pictures, and VCP sits right in the middle of that overlap. The more we talk about it that way, the faster the science and the care can catch up.
One of the best parts was seeing other VCP patients and families there. Getting to share that space with them, and getting to introduce them to people across the FTD community, was a gift. One of them was among the few attendees in a wheelchair. We wish with everything in us that they didn't need it, and at the same time, we're grateful for the
visibility their presence brought. Genetic forms of FTD can look different. They can affect the body in ways people don't expect. Every time someone sees that with their own eyes, the picture of this disease gets a little more complete.
None of this was about checking boxes. It was about building the knowledge, the awareness, and the relationships that get us closer to a treatment. Every conversation at our table, every hand shaken at a poster session, every name added to our community is a piece of the foundation. The goal isn't to keep having this conference forever. The goal is a day when we don't need it, or when we can offer people a preventative treatment before symptoms ever begin.
That groundwork can only be laid by people who know this disease from the inside. If you're part of the VCP or FTD community, your presence in these spaces matters more than you might think. The next big opportunity is right around the corner. The 15th International Conference on Frontotemporal Dementias (ISFTD) is coming to Philadelphia October 8 through 11, bringing together the researchers, clinicians, and advocates who are shaping the future of FTD care worldwide. If you can be there, be there. Show up where you can. Tell your story when you're ready. Nobody can do this for us, and that's exactly why we can do it together.
Watch all of the conference sessions HERE.
