The Association for Frontotemporal Degeneration (AFTD) is deeply concerned about recent policy changes and layoffs at the National Institutes of Health (NIH) that greatly disrupt biomedical research of high importance to the families we serve. FTD is the most common dementia diagnosed in people under 60 years and currently has no effective treatment. Many families affected by this neurodegenerative condition advocate for and participate in medical research in the hope that it will lead to an effective intervention to prevent or delay its onset, slow its progression, manage its symptoms, and provide a cure.

The recent announcement that the NIH will be capping all facilities and administrative (a.k.a. indirect) costs at 15% is untenable. Academic medical centers and other research institutions rely on this to cover the shared infrastructure needed to support numerous grants efficiently, including maintenance of joint equipment, data storage, utilities, compliance with measures to protect patient privacy, and more. It also supports the training and investment in the next generation of researchers who will continue this important work. This sudden, significant, and dramatic shift in funding will impede ongoing research and threaten future research, and we urge the Administration to rescind these cuts immediately. AFTD supports the temporary restraining order to block this change until a final decision can be reached, and we urge Congress to preserve indirect cost funding once again for NIH grantees.

We are also concerned about the continued reports of disruptions to federal funding awards. We applaud the additional recent court decision to place a restraining order on the funding freeze and, considering the longstanding and bipartisan support of federal research, AFTD urges the Administration to work towards restoring funding for vital FTD research programs.

Further, AFTD is alarmed by the indiscriminate layoffs of nearly 1200 staff and scientists at the NIH earlier this month. Of particular concern, approximately 10% of the staff at NIH’s Center for Alzheimer’s and Related Dementias (CARD) were fired, including Dr. Kendall Van Keuren-Jensen, recently hired to take over the leadership of CARD after its current director departs this year. Dr. Van Keuren-Jensen was wrongly removed from her post simply because her nascent tenure meant that she was still in a probationary period. This unjustified removal of 10% of CARD’s staff will undoubtedly disrupt the critical research into FTD and other forms of dementia supported by this Center. CARD also provides tools such as iPSCs that lower the cost of research at individual sites. Their expertise is invaluable to the dementia research community.

Research institutions and researchers depend on consistent and predictable funding sources and confidence that their positions will not be eliminated without cause and thoughtful consideration. These changes will disrupt and slow research that will improve the lives of people and families living with dementia, and thus, AFTD will continue to work in cooperation with our advocacy partners to strongly advocate for robust investment in biomedical research.