Linde Jacobs


Starting from a very young age, Linde was immersed in the medical community and culture of “caring for others.” She has been working in healthcare for the past 20 years, and before that, she accompanied her mother Allison to work, who was a physical therapist. From her first job as a Personal Care Attendant, she progressed into her CNA certificate, hospital volunteer, pediatric oncology clinic assistant, and then obtained her Bachelor of Nursing degree from Gustavus Adolphus College. In the last 15 years she has gained experience with people of all ages from birth to elderly; in hospitals, clinics, public health, and surgery centers.

Linde is a second-generation caregiver who watched and assisted caring for her grandmother, Beverly from a very young age. She then became her mother’s primary caregiver when she subsequently developed symptoms of MAPT FTD when Linde was just 22. Linde learned to balance caring for her mother while starting off her young adult life with her first professional job, starting a family and becoming a mother herself. Despite the family history, her mother’s journey with the disease was harrowing and faced many legal, financial, diagnostic, prejudicial battles until she passed away at the age of 62 in 2021. Shortly after her mother passed away at 62, Linde learned that she would face the FTD journey again, after genetic testing revealed that she was a positive genetic carrier for the MAPT gene.  

Fueled by failures of her past, while also fearing her future, Linde began the direct role of FTD advocacy by deeply engaging herself in research studies all across the United States; directly corresponding with top researchers working in FTD research; offering insight to government officials on current systemic issues; presenting to the NIH and FNIH; influential persons interviews; featured guest in blog posts, interviews, articles, podcasts; keynote conference speaker; and will be featured in an upcoming PBS documentary in 2025. All these efforts were done in honor of her mother, and to pursue a better future for her two young daughters who are at-risk for inheriting this same genetic mutation from her.