KING OF PRUSSIA, PA — A coalition of major nonprofit research organizations has awarded $2.1 million in grants to accelerate the development of diagnostic biomarkers for frontotemporal degeneration, aiming to close one of the most stubborn gaps in dementia care.
The Association for Frontotemporal Degeneration, Alzheimer’s Association, Rainwater Charitable Foundation, and the Robertson Foundation jointly funded three research projects under a new biomarkers initiative focused on improving how FTD is detected and diagnosed. The program marks its first year and builds on an earlier AFTD biomarkers effort that ran from 2016 through 2020.
FTD is among the most challenging neurodegenerative diseases to diagnose, often taking years due to its biological complexity, overlapping symptoms with other disorders, and frequent early onset. The absence of validated diagnostic tools delays access to care, complicates clinical trial enrollment, and slows research progress.
Identifying reliable biomarkers is seen as a critical step toward changing that trajectory. In addition to improving diagnosis for FTD, researchers say the work could deepen understanding of other neurodegenerative diseases where symptoms and pathologies overlap.
The Holloway Family Fund at AFTD played a central role in launching the initiative. AFTD board member Kristin Holloway said prolonged diagnostic delays carry a heavy cost. “Too many families struggle for years without an FTD diagnosis, which is not only incredibly difficult for those affected, it hinders research progress,” Holloway said. “I’m proud to be supporting this initiative through the Holloway Family Fund to bring hope and agency to the community.”
After a rigorous review process administered by AFTD with the support of external scientific experts, three projects were selected for funding. Each received approximately $700,000 and will be completed over the next two years. All three focus on detecting FTD-related biomarkers in biofluids such as blood or spinal fluid, with the goal of developing practical diagnostic tests.
The funded studies include work by Nicolas Barthélemy at Washington University examining tau-related biomarkers, Andrew Stern at Brigham and Women’s Hospital focusing on detection of misfolded TDP-43 proteins, and Leonard Petrucelli at Mayo Clinic Jacksonville investigating cryptic TDP-43 targets associated with FTD.
Heather M. Snyder of the Alzheimer’s Association said recent advances in Alzheimer’s diagnostics helped shape the effort. “We have seen tremendous progress in Alzheimer’s biomarkers in recent years; expanding that progress into other diseases that cause dementia — such as FTD — is an essential positive step for patients, researchers and clinicians,” Snyder said. She added that the grants could help advance earlier detection, track treatment effects, and identify patients for research studies.
The Rainwater Charitable Foundation said early detection tools are essential to moving therapies forward. Glenn Harris of the foundation said supporting innovative biomarker programs could eventually improve clinical trial readiness and access to treatments for people living with FTD.
Planning is already underway for a second round of grants, with a new request for proposals expected in early 2026. Future awards will emphasize approaches that could be widely accessible, either as screening tools or as diagnostic aids to support specialist care.
“At AFTD, we are always considering how to lower barriers to diagnosis so that patients can have improved access to resources and treatments,” said Penny Dacks, chief scientific officer at AFTD. She said the long-term aim is to equip clinicians and families with tools that clarify whether specialty care is needed and help specialists accurately diagnose every form of FTD.
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