“We have to stop and remember that the person they were is not the person they are, and it’s going to keep changing. I hope we can get people to look at the dementias differently.”
– Dawn O’Gara, former FTD care partner and current AFTD volunteer

Dawn O’Gara’s father, Jim Tobin, was a well-respected veteran who enjoyed spending time with his grandchildren. Nine years ago, Dawn and her family noticed changes in Jim’s personality – he became passive and less aware of others’ feelings, spent less time with his family, and ate more frequently.

Jim felt nothing had changed with his behavior. The inability to understand one’s illness and its impact on family members is a hallmark symptom of FTD, otherwise known as anosognosia. Dawn’s mother reacted to these changes as directed at her and struggled to recognize that there could be a medical explanation. Dawn and her siblings encouraged their parents to seek a firm diagnosis. Though physicians initially thought he had Parkinson’s disease or schizophrenia, Jim was diagnosed with bvFTD in 2014 at the age of 64.

Using AFTD’s website to educate herself about FTD, Dawn found comfort in the amount of information and support available. When Jim moved into a long-term care facility, Dawn felt a renewed sense of purpose to raise awareness, becoming an AFTD Ambassador and fundraising volunteer to share her family’s journey and offer support to others navigating an FTD diagnosis.

Jim passed away in August 2022. While it was a difficult time for her family, Dawn remains committed to sharing her dad’s story, reassuring others that they are not alone and to be patient with their loved ones as well as themselves.

“When you tried to explain [my dad’s FTD diagnosis] or his behaviors, people just didn’t understand,” Dawn said.

Dawn and Jim’s story reminds us why awareness is an essential part of AFTD’s mission. Each FTD journey is unique, and by sharing each family’s experience, we can stimulate greater understanding of the disease, leading to earlier and more accurate diagnosis, responsive and quality care services, and more funding for FTD research.

“I love being an ambassador. Going out and sharing his story, making people more aware through the educational presentations that I do, and being there for other families…it’s healing for me.”

Every story brings awareness to make things better for the next family.
Every story moves us closer to a future free of FTD.

Will you join Dawn in raising awareness and supporting AFTD’s mission to #endFTD? By making a tax-deductible gift, you can help AFTD amplify the stories of other people and families affected by FTD, provide information and resources, and advance research that brings forward treatments and a cure.