Posts by Mary Krause

Researchers working on FTD studies often face a major challenge: not enough participants. By joining the FTD Disorders Registry, you can help build a stronger, more research-ready community.

It is important to login to your Registry dashboard regularly to review pending activities and keep your profile up-to-date.

We often talk about deidentified data provided to researchers., but what does “deidentified data” really mean, and how can it help advance FTD research while protecting your privacy?

Frontotemporal degeneration research is becoming more collaborative, offering real momentum toward faster trials and more meaningful progress for families impacted by the disease.

When you stay research ready, you help researchers understand that there is a strong, engaged, community eager to accelerate progress.

Learn how to find FTD clinical trials and stay informed as new research opportunities emerge.

AviadoBio has expanded its ASPIRE-FTD clinical trial, creating new opportunities for people with GRN mutations to participate in gene therapy research.

Care partners play a vital role in helping researchers understand how the impact of FTD unfolds in daily life. Through their observations, experiences, and participation in the FTD Disorders Registry, care partners provide insights that shape future studies and ensure research reflects the real challenges families face.

CurePSP’s Louder Than Words program provides free voice banking and AI voice cloning tools for people living with PSP, CBD, and MSA, helping individuals preserve their voice and stay connected with loved ones even if speech becomes difficult.

FTD is a spectrum, not a single diagnosis. Recognizing the differences between subtypes helps researchers design smarter studies, accelerate discoveries, and move us closer to effective treatments.