Tanya's Story

Tanya’s husband, Bob, was a beloved father and high school history teacher who sadly passed away at the age of 58–four years after his symptoms started to show from Behavioral variant FTD. He and Tanya have two wonderful identical twin sons.

"When I first started dating Bob, he mentioned that his father had died of what he called 'early onset Alzheimer's,' so my husband was always aware that he had this potential genetic risk." It worried him, but they both knew there are no guarantees in life so they should live and not worry about it.

Adored by his students and colleagues, he started to exhibit some early symptoms in his early to mid 50s. Tanya didn't know if it was anxiety or depression, but she noticed a change: "He became less organized, less focused. It seemed that work had become a lot for him."

Tanya didn't know something was really wrong until 2017, when Bob had a car accident and left the scene of the car accident. "Leaving the scene of an accident was antithetical to who he was," Tanya remembers. "He was so shell-shocked that he could barely speak." From that time on, his symptoms started to accelerate.

After the car accident, Tanya began to work tirelessly to figure out what was going on. She consulted various neurologists and finally was lucky to be able to access one of the world's leading specialists on FTD, Dr. Karen Marder of Columbia University Irving Medical Center. A simple blood test confirmed he had the MAPT gene, which generations before him clearly had suffered from.

Since that time, Tanya has been fighting to eradicate the stigma of dementia, raise awareness of genetic FTD and the disease in general and fight for a cure. You can read more about Tanya at tanyawsteel.com