Susan, a new full-length documentary about a woman diagnosed with FTD and the choices she and her family struggled with, is now available to stream.

The film’s subject, Susan Suchan, was a tireless advocate on behalf of FTD awareness before her 2018 death, at age 60. Initially misdiagnosed with early-onset Alzheimer’s disease, Susan eventually learned she was living with primary progressive aphasia, an FTD subtype that affects language ability.

The film carries on Susan’s goal of letting others know about FTD. Following her diagnosis, Susan spoke about her own lived experience – she worked to change perceptions, eliminate stigma, and help bring to life the reality of her diagnosis. She was an AFTD volunteer and recorded a welcome video for the 2016 AFTD Education Conference. The film shows her attending dementia conferences and visiting residents in memory care facilities, encouraging interaction and positivity despite her challenges.

The film presents Susan and her family in the happy chaos and tumult of family life, as well as in more reflective settings where they discuss Susan’s disease progression and the changes in her personality. In some of the movie’s most compelling segments, Susan herself shares not just the frustration of her progressing mental and physical deficits, but her feelings at knowing her grandchildren, children, and her sister will one day lose her.

Susan puts human face on FTD, turning on its head the idea that someone with a diagnosis like this doesn’t have a voice.