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We are families united across the globe who refuse to let another generation suffer what we've endured. Together, we're accelerating research, supporting families, and advocating for life-saving treatments.
For generations, our families have watched loved ones deteriorate from MAPT FTD, a genetic form of Frontotemporal Dementia that strikes people in the prime of their lives. We've lost parents, siblings, and relatives to a disease that, until recently, few even knew existed.
In 2023, founding members met at an FTD conference—finally encountering others who understood this isolating disease caused by a genetic mutation of the MAPT gene. The kinship we felt was transformative, emboldening us to come together with a shared determination: WE will be the generation that changes this story.
Today, Cure MAPT FTD is a global community of:
Together, we're transforming grief into action and isolation into community.
Spread awareness of FTD, of the importance of genetic testing, and of Tau/MAPT.
Advocate for MAPT-specific trials and access to other FTD gene-specific trials.
Find, and connect to, the growing global network of MAPT families and researchers.
Family-led, Science-guided
We're not professional advocates - we're families living this reality. Our urgency is personal, our commitment absolute, and our Scientific Advisory Board ensures we're strategically advancing real solutions.
Global yet Connected
MAPT FTD is rare, but we've quickly found each other across continents. Our network means no family faces this alone.
Focused on Action
Every effort drives toward clinical trials and treatments. We measure success not just in awareness, but in families enrolled in trials, research partnerships established, and progress toward therapies.
Transparent and Collaborative
We share information freely, connect families with researchers, and work collaboratively alongside other FTD organizations.
In just two years, we've built a global movement that's changing the landscape for MAPT FTD families and research.
55 Family Kindreds
Representing 500+ people across 5 countries
10 MAPT Mutations
United in our mission for treatments
$200,000+ Raised
From individual donors, friends, and family
We're just getting started.
You're not alone. Join our community for support, information, and connection.
Partner with us to advance MAPT FTD research and connect with families eager to participate in trials and advance therapeutic development.
Fund MAPT-specific research and trial infrastructure, or donate to us directly
Spread awareness, share our story, and help us build momentum.
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