As the new year begins, AFTD continues to implement a three-year strategic plan across five mission pillars. The research pillar strives to drive research to a cure and improve the quality of life for all affected by FTD.

Our strategies focus on gaps that AFTD is uniquely positioned to address to accelerate the pace of research. The development of new treatments involves academic researchers, clinicians, regulators, drug developers, individuals and families affected by FTD, and partner organizations, each with their own essential expertise. AFTD works with all of these partners, pinpointing urgent needs and responding with targeted funding, advocacy, education, and opportunities to convene and collaborate.

Time to diagnosis og clinical–trial readiness are two emergent research priorities in the new strategic plan. A timely and accurate diagnosis remains a major challenge for FTD compared with many other neurodegenerative disorders. This delay impacts families’ access to care, education, and resources. It also hinders research by reducing the number of people able and willing to participate in research before the disease burden worsens.

Meanwhile, clinical trial readiness – the ability to efficiently complete clinical trials – has improved in recent years but remains a major limitation that discourages investors and researchers from testing emerging treatments in FTD.

2025-2028 research objectives include:

Our tactics to accomplish these objectives have a unique lens for 2026:

In 2025, AFTD and our partners committed nearly $9 million in research funding. This included the launch of our newest program, the FTD-diagnostiske biomarkørinitiativ, to identify tools for improving specific and early diagnosis. The initiative is co-funded by the Alzheimer’s Association, Rainwater Charitable Foundation, and the Robertson Foundation, and supported by the AFTD Holloway Family Fund.

AFTD received input from FTD community members in the biggest needs which led to the launch of this initiative. Currently, FTD is diagnosed primarily by brain imaging, along with a specialist assessment of the individual. For many, a definitive diagnosis is only made during an autopsy. Misdiagnosis is rampant, and many people are never referred to the necessary specialists. Biomarkers will change this. Biomarkers are a common practice in medicine where something is measured to indicate disease presence or severity. An example is high blood pressure as an indicator of heart disease. Low-cost screen biomarkers could identify the people who need to see the specialists while diagnostic biomarkers could provide objective tools to support clinicians’ judgment.

With partner support, AFTD awarded $2.1 million in the first year of the FTD Diagnostic Biomarkers Initiative to three innovative research projects. The next round of funding for the FTD Diagnostic Biomarker Initiative is underway, with an anticipated release in the spring of 2026. We look forward to continuing this new program and prioritizing projects that focus on early screening approaches to help determine if a specialist visit is needed.

Providing funding to early career scholars will also remain a pivotal program for AFTD, supported by the Holloway Family Fund, providing two-year fellowships along with mentorship and conference travel support for promising early-career scientists. The Well-Being in FTD Pilot Grants program will also be offered annually to provide pivotal early-stage support for new research projects to improve quality of life for all touched by FTD. Meanwhile, AFTD continues its long-standing partnerships with the Alzheimer’s Drug Discovery Foundation to support preclinical and clinical stages of drug discovery for FTD.

AFTD will continue these successful research programs and others while also exploring new tactics to improve clinical trial readiness. Promising treatments are being tested in clinical trials today for other biologically related diseases like Alzheimer’s disease or ALS, which may be successful in people with FTD. By helping develop the research tools to make clinical trials for FTD more efficient and informative, AFTD will be able to encourage more investors and drug developers to focus on FTD and to learn from every trial.

People with lived experience of FTD are at the center of our research initiatives. For example, through various AFTD programs in 2025, 24 different family advocates shared their experiences with FTD with researchers.

By the end of 2025, over 2,000 new participants have joined the FTD Disorders Registry and completed more than 2,800 surveys about the lived experience of FTD. Those insights about the lived experience of FTD have been shared with researchers in 13 presentations. Meanwhile, the Registry supported the recruitment efforts of 22 external studies by academic and industry leaders.

This newsletter itself is an AFTD tactic – new in 2025 – to provide holistic updates of FTD research six times a year. AFTD also informs our growing FTD community about research with webinars, events, and web content, and by our investment in and partnership with the FTD Disorders Registry.

In-person conversations enable collaborations and help overcome challenges in research.  AFTD hosts two important invitation-only research meetings each year:

Det AFTD Holloway Summit convenes various scientific stakeholders each year to advance an important topic in FTD research, such as studying possible risk factors, and exploring the possibility of digital tools to assess FTD symptoms remotely. The FTD Research Roundtable is a forum to share understanding and accelerate FTD drug development, bringing together biopharmaceutical companies, regulators, academic experts, funders, and advocates.

Outcomes include new working groups, publications, and funding opportunities. 2025 marked the third consecutive year of both events. A Holloway Summit 2025 speaker shared in a post-meeting survey: “The Holloway Summit was one of the best meetings that I have been to in terms of the quality of content, the grounding of research with meaningful interactions with individuals with lived experience (i.e., the reasons why we do the research) and the ability to brainstorm. It was a great experience, and I really appreciate the opportunity to attend.”

In 2026, AFTD will continue with the theme of prioritizing diagnosis and trials. The year will start with the February Holloway Summit titled “The FTD Diagnostic Journey,” focusing on research, tools, and guidelines to shorten this journey. The FTD Research Roundtable meeting in fall 2025 focused on outcome measures and statistical designs for clinical trials and will continue to address themes relevant to clinical trials in 2026.

We are proud to support the important work of other organizations that bring together researchers to accelerate research. AFTD has invested in the International Society for FTD (ISFTD) to strengthen the infrastructure of this pivotal organization of clinical and research leaders. We also sponsor meetings hosted by others, such as the International Conference for PPA, the PSP and CBD International Research Symposium, and a new retreat on ethical challenges in data sharing for dementia research, among many others.

Everything that AFTD achieves for research is made possible by our community, from our Medical Advisory Council, grant reviewers, grantees, scholars, mentors, speakers, vendors, funding partners, and regulatory and government collaborators, to our many volunteers, donors, and advocates. Thank you to everyone who has worked with us in 2025. If you’d like to get involved in 2026, please reach out to us at research@theaftd.org.