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 identical twin sons.

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

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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 a looming midlife crisis, but she noticed a change: "He became less organized, less focused. It seemed that work was becoming overwhelming for him."

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As they began to search for answers, consulting with neurologists and internists, various diagnosis, from depression to bipolar, were offered but it wasn't until Bob had a car accident and left the scene, that she realized this was something significant and undiagnosed. "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.

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After the car accident, Tanya worked tirelessly to find answers, and finally was 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 IVS10+16 mutation. Now all of these early and unusual deaths in his family made sense.

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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. She is on the Board of Cure MAPT FTD and is writing a brain-health cookbook with Dr. Marissa Schafer, Associate Professor of Physiology at the Mayo Clinic, for Ten Speed Press, to be published in the Fall of 2027. You can read more about her at tanyawsteel.com

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