Posts by Mary Krause

Being counted is an act of hope, a way for individuals and families impacted by frontotemporal degeneration to turn their lived experience into momentum for research, visibility, and a future with better diagnosis, care, and treatments.

Ever wonder why the Registry asks about finances or work life? Here’s how those questions help move FTD research forward.

You joined the FTD Disorders Registry. Now learn five simple ways to stay research ready and strengthen the future of FTD research.

While the PR006 program has been discontinued, research into FTD continues. Here’s what this update means for the community and the path forward.

What does it really mean for an FTD registry to be research ready, and why does community participation matter so much?

Progress toward an FTD cure depends on communities and researchers working together.

As 2025 comes to a close, we reflect on a year of growth and engagement that underscores the FTD Disorders Registry’s role in advancing research and amplifying the voices of those impacted by FTD.

The FTD Disorders Registry was featured at CTAD in San Diego, where a poster presented by Dr. Shana Dodge highlighted how the Registry is helping accelerate clinical trial recruitment in frontotemporal degeneration.

Every biosample holds valuable information that brings us closer to earlier diagnosis and effective treatments for FTD.

The Fall Research Roundup highlights new studies now enrolling people living with FTD, care partners, and biological family members.