AFTD Ambassador Honors Daughter by Spreading FTD Awareness: “FTD Didn’t Win in the End”

Graphic: AFTD Ambassador Honors Daughter by Spreading FTD Awareness, "FTD Didn't Win in the End"

In a recent interview with WTHI AFTD Ambassador Dawn Kirby recently shared her daughter’s FTD journey with WTHI-TV in Terre Haute, Ind., explaining how she turned her family’s pain into purpose by spreading awareness of the disease.

While FTD is the most common dementia in people under 60, Kirby’s daughter Kara began to experience symptoms when she was just 29. In a previous interview, Kirby told AFTD that the first signs of Kara’s FTD came during a “perfect storm” of life events, including the birth of Kara’s son, which made it difficult to notice the onset of symptoms. The family had to visit several doctors before Kara finally received a diagnosis of behavioral variant FTD (bvFTD).

“You think, ‘Oh! Grandma has Alzheimer’s.’ Well, she’s 89. That happens,” Kirby told WTHI. “You don’t think ‘Kara’s 29. She probably has dementia.’”

WTHI previously reported on the family in 2019, shortly after Kara was diagnosed.  In that report, Kirby told WTHI how hard it was to see Kara lose her ability to show emotion and pain.

“That makes it very difficult when you see your child now unable to respond,” Kirby said.

Kara passed away on New Year’s Day 2023. Kirby told WTHI that sharing her family’s story and working to raise awareness as an AFTD Ambassador is to honor Kara, who Kirby says is her hero. “FTD did not win in the end,” she said. As the WTHI report notes, the work of advocates and volunteers like Kirby is boosted by the public announcements of high-profile FTD diagnoses, such as those made by about Wendy Williams and Bruce Willis family. Public advocacy from people like Kirby, Emma Heming Willis, and TikTok influencer Nicole Petrie not only raises awareness but helps those living with FTD know that there are others who understand.

“Breaking through that sense of isolation is so important to be able to move things forward,” AFTD Senior Director of Programs Sharon Denny, MA, told WTHI. “And for the support and resources that families need.”

Kirby is hosting an AFTD Meet & Greet event in Terre Haute on Saturday, April 27, at Gingersnaps Coffeehouse & Cafe. To learn more and to RSVP, visit the event listing on AFTD’s website.

In a Volunteer Update featured in AFTD’s Help & Hope newsletter, Kirby shared her experience on the FTD journey and how it inspired her to volunteer with AFTD and become an Ambassador.

Are you interested in raising awareness of FTD? Do you want to contribute to an FTD-free future? Volunteer with AFTD to spread awareness, support those who need it, and make a difference for those affected by FTD.

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