Sandra Ahten’s advocacy began in 2019 when her mother’s diagnosis was corrected from Alzheimer’s to GRN-related Frontotemporal Dementia (FTD), a turning point that helped her family understand their broader genetic history of neurodegenerative disease. Sandra’s uncle had died of Pick’s disease, and her grandmother had dementia—both misattributed. After genetic confirmation, Sandra became her mother’s full-time caregiver until her death in 2020.

Knowing she was at risk, Sandra underwent genetic testing and learned she carried the GRN mutation. Confronted with limited treatment options at the time, she considered long-term care planning and end-of-life decisions. Today, thanks to advancing research, Sandra sees a path forward. She remains symptom-free at age 63 and inspired by new developments, including her sibling’s participation in a promising gene therapy clinical trial.

Sandra is a vocal advocate for GRN-FTD research, emphasizing the importance of genetic awareness and healthy living. In 2023, she shared her journey publicly to help others better understand the emotional and ethical complexities of hereditary neurodegenerative disease.