Jacquelyn Shapiro’s journey with Frontotemporal Dementia (FTD) began in 2020 when her mother was diagnosed with behavioral variant FTD at just 56 years old. Although doctors initially dismissed a genetic cause due to the absence of a family history, Jacquelyn and her family pushed for testing. The results were surprising: her mother tested positive for a GRN mutation. Further testing revealed her grandfather also carried the mutation, but had two protective TMEM106B alleles that appeared to prevent disease symptoms—a rare case offering important insights into the role of genetic modifiers in FTD.

Since 2021, Jacquelyn has become a vocal advocate for FTD awareness and genetic testing. Through social media and public speaking, she shares her family's story and the emotional journey of being a caregiver’s daughter. She works with pharmaceutical companies to provide a lived-experience perspective, creates community for others affected by dementia, and actively promotes clinical trial participation. Jacquelyn currently serves as the New York Ambassador for the Association for Frontotemporal Degeneration (AFTD).

Her advocacy has been featured on podcasts such as Remember Me and Compassion in Caregiving, as well as in a grassroots caregiver documentary. She has spoken at national events including AFTD’s Holloway Summit and programs hosted by the Alzheimer’s Foundation of America. Jacquelyn also collaborates with her local Alzheimer’s Association chapter and memory care organizations to expand awareness of FTD.

Jacquelyn lives in Long Island with her husband, Alen, their son Gregory, their dog Bialy, and two cats, Peach and Golda.