AFTD Brand Influencer Nicole Petrie shared her family’s FTD journey with host Lisa Opie on the podcast Miss Represented earlier this year.

Petrie is a model, activist, and entrepreneur, and while she is proud of all her roles, the one she takes most seriously is being a care partner for her mother, Cheryl, who was diagnosed with FTD when Petrie was in college.

Spreading FTD Awareness

In the podcast episode, Petrie and Opie discuss how being in the public eye has given her a platform to spread awareness about FTD through her social media channels, where she highlights her experiences as a care partner

Petrie has often posted on social media about her career, but she did not go viral until posting a TikTok in which she accidentally brushes her mother’s hand. Viewers noticed her mother reacted in a way that a neurotypical person may not react, and they had questions. The video took off, with more than a million views in 24 hours.

Petrie has realized that speaking to other families dealing with FTD is a privilege, though she says it does not always come easy. “It’s not super comfortable to talk about my mom’s diagnosis, to talk about the hardships of the day-to-day,” says Petrie. “But I know there are millions of people going through the same thing and by talking about it, I’m making them feel less alone.”

Selfcare and Career Projects

As a care partner herself, Petrie understands the necessity of selfcare. To reduce her risk of developing FTD and to support her mental health, she became a vegan eight years ago and regularly goes to the gym. She also recognizes the need to have something to work toward, so she created a clothing line aimed at caregivers.

“My dad owned a small motor sports business my whole life, and I watched [my mom] making embroidered merch for him to sell in the store,” she says. “So, I was really inspired to create some designs and put them on t-shirts and bags … where anybody, really, but especially caregivers, can wear them out and show the pride of being a caregiver. The main message of it is, ‘The Heart of a Caregiver.’”

Caring for Her Mom

Petrie continues to model and is exploring other career opportunities, but she sees her primary role as helping to care for her mother and supporting her father, who is also a full-time care partner to Cheryl. She also recognizes she can be a role model for other people in the public eye who are trying to expand their reach through social media. “Vulnerability is key,” she says. “There is something that everyone is going through. There is something that everyone wants to learn and grow and get better at. And if you are able to provide some of that for someone,” said Petrie, “do it.”

FTD is a complex disease with emotional and practical challenges that can be as isolating as they are overwhelming. Finding a support group can provide you with a safe space to share your thoughts with others who understand and trade resources for the journey ahead. AFTD’s HelpLine can support you and answer any questions you have about FTD; contact the HelpLine at 1-866-507-7222 or info@theaftd.org.