Emma Heming Willis gave updates on her family’s FTD journey and discussed the disease alongside AFTD CEO Susan L-J Dickinson, MSGC, in an interview broadcast on the Today show on September 25, the second day of World FTD Awareness Week.

Heming Willis shared her decision to become an advocate to raise awareness of FTD and bring attention to the need for more research on the disease.

“Dementia is hard,” Heming Willis said. “It’s hard on the person diagnosed; it’s also hard on the family. And that is no different for Bruce, or myself, or our girls. When they say this is a family disease, it really is.”

Dickinson and Today co-host Hoda Kotb discussed misdiagnosis, a common obstacle for families affected by FTD. The onset of FTD is often subtle, as the two discussed, and early symptoms can be easily mistaken for everyday mistakes.

Compared to other neurological diseases, FTD “is less common, and doctors aren’t [as] familiar with it,” Dickinson told Kotb. “It can take almost four years for people to get diagnosed on average, and they can accrue many misdiagnoses along the way.”

Care partners often step into their role with no knowledge of FTD or how to care for a person diagnosed, Heming Willis noted. She emphasized the importance of care partners finding support.

“As a care partner, it’s so important to be able to ask for help,” Heming Willis said, recommending that they look to organizations such as AFTD. “It’s important for care partners to look after themselves so that they can be the best care partner for the person they’re caring for,” she added.

Heming Willis is taking part in this year’s World FTD Awareness Week publishing discussions with FTD experts to YouTube and Instagram each day. At the time of this writing, Heming Willis has discussed topics such as self-care and finding support for your journey, which are essential to the well-being of persons diagnosed, care partners, and family members. Heming Willis has had conversations with AFTD Brand Ambassador and TikTok influencer Nicole Petrie, dementia care specialist and occupational therapist Teepa Snow, and Darby Morhardt, PhD, a research professor at Northwestern University’s Mesulam Center for Cognitive Neurology and Alzheimer’s Disease.

Join Emma Heming Willis, Nicole Petrie, and others bringing attention to FTD across the world by heading to the World FTD Awareness week page for social media templates, daily themes, and more.

If you have a question about FTD, need guidance on diagnosis or genetic testing, or simply need to talk to somebody who knows what you are going through, reach out to the AFTD HelpLine at 1-866-507-7222 or info@theaftd.org