When Jim Tobin was finally diagnosed with bvFTD, his daughter Dawn O’Gara quickly realized that where they lived in central Massachusetts was bereft of clinical and caregiving resources.

“No one here had even heard of FTD,” Dawn said. “My family felt isolated and realized there must be other FTD families in the region who also needed a community to lean on. I decided to help fix the problem by volunteering for AFTD.”

Volunteering was second nature for Dawn, who had been a Girl Scout Leader and a Special Olympics coach. “Working with special-needs children taught me to look at the world from their perspective,” Dawn said.

Since becoming an AFTD volunteer, Dawn has worked to raise critical awareness in her community, including ensuring FTD is part of the conversation in her local dementia-friendly community. She also recently appeared on Caregivers Solutions Info with Marcia Teele, an online show in which she shared her experience and advice on FTD caregiving.

“Many caregivers I speak with put up a good front, [trying] to stay strong for their loved ones,” Dawn said. “I draw them out to reveal their deeper truths and emotions and provide a safe place to feel human.”

Dawn has also served as a Food for Thought Liaison, supporting volunteers across the country as they plan and host events in support of AFTD’s annual Food for Thought campaign. “Dawn’s commitment and dedication inspired many to tell their stories, raise awareness, and encourage funds for AFTD’s mission,” said Brittany Andrews, AFTD’s Fundraising Coordinator.

Recently, Dawn took on a new volunteer leadership position as AFTD Ambassador. “Before volunteering, I felt helpless confronting this relentless disease,” she said. “As an AFTD volunteer, I have learned that compassion, whether you’re providing it or receiving it, heals everyone.”