A recent article in The New York Times highlights the inspiring story of Linde Jacobs, a nurse and advocate carrying a genetic frontotemporal degeneration (FTD) variant. Her journey exemplifies the resilience and determination needed to confront the challenges of living with a known FTD-causing gene while striving to make a difference for others.

Linde carries a mutation in the MAPT gene, which places her at heightened risk of developing FTD. Yet, instead of succumbing to fear, she has transformed her genetic status into a call to action. Her advocacy led her to co-found Cure MAPT FTD, a nonprofit that raises awareness, assists a global network of MAPT families, and advocates for clinical research trials that will lead to a cure.

AFTD supports and collaborates with organizations like Cure MAPT FTD. Although persons with a confirmed genetic form of FTD represent a minority of FTD diagnoses, these families are crucial because they give researchers a better understanding of how to approach potential treatments since the biology of the disease is better understood than in cases where the cause of FTD is not known – which are labeled as apparently sporadic cases. Researchers can study a specific gene like MAPT, learn how it is supposed to function, and then develop treatments to improve the gene’s function.

This research is the key to treating all people with FTD – whether their FTD is caused by genetic variants or if FTD is apparently sporadic. Families impacted by either genetic or apparently sporadic FTD can join the FTD Disorders Registry to stay informed about clinical trials and research. Researchers and investors look to the Registry to see the number of people with an unmet medical need that they can address.

The 2025 AFTD Education Conference will include a Genetic FTD Symposium on May 1 to discuss the genetics of FTD and the role it is playing in the path to a cure.

AFTD will continue to collaborate with Linde and Cure MAPT FTD on behalf of all facing this disease – to improve the quality of life of people affected and drive research to a cure.