News & Updates

VCP disease can lead to FTD, and for many families in our community, the financial weight of that diagnosis is as real as the medical one. Here are three programs built to help.

The goals of the study are to better understand how MSP changes people’s strength and movements as well as how it affects their daily life over time. Another goal is to collect biological specimens for future biomarker discovery. All of this will help researchers better plan and design future research studies.

An overview of the 2026 AFTD Education Conference in Seattle, WA.

Thanks to this community, we raised over $125,000 this year, far exceeding our goal of $100,000. Thank you to everyone who came, gave, sponsored, and volunteered. The room itself was a reflection of this community: patients, scientists and researchers, family and friends from many seasons of life. We were all in one place for the same reason, to bring a cure for VCP disease.

VCP researchers, clinicians, patients, and caregivers from around the world sat in the same room together for the first time, not a scientific meeting on one weekend and a patient conference on another, but one Summit with eleven unique sessions packed across three days in Atlanta.

A full overview of everything attendees need to know for the 2026 VCP International Scientific & Community Summit

First-Ever Combined Scientific and Patient Community Conference Brings Together the Broad VCP Disease Research and Patient Community to Accelerate Progress Against a Rare and Devastating Disease ATLANTA, GA — July 22–25, 2026 — The 2026 VCP International Scientific and Community Summit will bring together scientists, clinicians, patients, and caregivers at the Hyatt Centric Midtown Atlanta for four days of cutting-edge science, patient-centered dialogue, and community buildin

A full guide on what to expect at the 2026 Cure VCP Disease Celebration

VCP disease advocacy at One Young World Summit in Munich as part of the AstraZeneca Young Health Impact Fellowship