Dawn O’Gara, an ATD Ambassador, spoke about her beloved father’s FTD diagnosis and how it spurred her activism in an article published in the Worcester Telegram & Gazette on October 7.

Normally a “take charge” type of person, O’Gara’s father James Tobin began acting out of character in the early 2010s. His generous and devoted nature had dimmed, and he grew argumentative and at times even callous.

When Tobin was diagnosed with behavioral variant FTD in 2014, suddenly everything made sense, O’Gara said. But knowing the cause of his inappropriate behavior did little to lessen the family’s sadness. Tobin passed away in August 2022, but “FTD stole my dad long before he died,” O’Gara said.

In 2019, O’Gara began volunteering with AFTD, determined to spread awareness of the disease that was claiming her father. Since then, she has raised awareness by sharing her stories in the media, hosting fundraisers to support AFTD’s mission, and supporting volunteers in planning their AFTD Food for Thought events.

She became an AFTD Ambassador in 2021, using her role to expand awareness throughout Massachusetts and beyond by conducting outreach, participating in speaking engagements, and attending events on AFTD’s behalf. She also communicates with elected officials on key issues, advocating for them to make policy and legislative changes related to medical research, caregiving, and services to improve the lives of those affected by FTD. Her advocacy work has led Massachusetts to pass both a resolution and a proclamation recognizing FTD Awareness Week in 2024.

The family does not know if Tobin had a genetic variant that caused his FTD, nor have they been tested. O’Gara says the current lack of a cure is a factor in her decision, as is life insurance companies potentially denying a new policy because a genetic FTD diagnosis could be considered a preexisting condition.

Before getting genetic testing, AFTD strongly recommends meeting with a genetic counselor, who will walk individuals through the decision-making process.