AFTD Conference 2026: Conversation, Connection, and Community

At the end of April, staff members from the ADRC visited Seattle to attend the 2026 AFTD Education Conference. The two-day conference brought almost 500 attendees, including people living with frontotemporal degeneration (FTD), care partners, families, researchers, and healthcare professionals. The conference offered thoughtful sessions, immersive experiences, and opportunities to hear directly from experts and people living with FTD.

“There was something powerful about being in a space where everyone, in some way, understands the journey,” said Tasha Loftin, the Community Engagement Coordinator for the ADRC and first-time attendee of the conference. “One moment you might be learning about the latest research, and the next you are immersed in conversations about what it means to live with this diagnosis day-to-day. It was informative, yes, but also deeply human.”

Makayla Kelleher, a Clinical Research Coordinator supporting FTD research, shared similar feelings, saying “This was my first time attending the AFTD Education Conference, and it was a highly meaningful experience. Seeing providers, researchers, and families come together to learn and connect about FTD was very empowering.”

The conference focused on genetic FTD. Speakers, including keynote speaker Dr. Thomas Bird, discussed the history of genetic discoveries and how mutations in these genes contribute to disease onset, progression, and overall risk. Later sessions explored research participation and how patient and family involvement in research directly contributes to the development of therapies and improves understanding of disease progression.

Outside of the main sessions, attendees could attend a variety of breakout sessions. Some of these sessions focused on the theme of genetics, while others highlighted advocacy efforts, caregiving experiences, and resources. Others were deeply practical, sharing tips and guidance on legal planning and explaining the difference between wills and trusts. Tasha and Makayla attended different breakouts, and each highlighted the session that left a lasting impression.

Tasha attended a session called Decisions that Shape Us: Living with Genetic FTD. “Hearing people share personal stories in their own words was incredibly meaningful. Each perspective was different, shaped by experiences with genetic risk, caregiving, or participation in research,” she said. “There was so much honesty about what it feels like to live with the decisions they make and the weight they carry. It reminded me how important it is to listen, really listen, to lived experiences and not just talk about them.”

The breakout session titled When Love Leads: Male Caregivers on the FTD Journey included some of Makayla’s favorite moments from the conference. “Hearing directly from caregivers provided insight into the caregiving role and shed light on the emotional challenges, resilience, and dedication asked of them,” Makayla said. “Their stories emphasized the importance of support networks and highlighted elements that are not always represented in caregiving discussions.”

The Mayo Clinic ADRC is committed to supporting caregivers and advancing research into FTD. The center currently serves as a co-coordinating center for one of the largest FTD-specific research studies in the country, ALLFTD. We wanted to show our commitment by hosting a booth. Tasha worked at our booth, which gave her the opportunity to speak with care partners supporting someone they love, individuals with an FTD diagnosis trying to understand what comes next and people asking thoughtful, honest questions about research, support, and what their options might be.

“What stood out most was not just the questions, but the trust. People were willing to share parts of their story, their uncertainty, and sometimes their fears,” Tasha reflected. “My role was to provide information about research, support, and resources, but often the most important thing I felt I could do was simply listen. Sometimes just being present and acknowledging where someone is in their journey matters more than having the perfect answer.”

Because FTD is a rarer condition, the community can feel small. This creates an atmosphere where even a conference of 500 people can feel intimate, honest, and real. Attendees were there not only to learn; they were also there to support each other in ways that only this kind of space allows.

Tasha and Makayla both left this conference with new understandings to take back to Rochester. “Overall, the conference was such a positive experience and reinforced why I do what I do,” Makayla reflected. “Not only did I gain new knowledge that will be valuable in my day-to-day, but I was able to witness first-hand the power of the FTD community. From detailed scientific history lessons to learning about meaningful ways to be an FTD advocate, this conference has left a lasting impact on me.”

Tasha shared similar feelings, saying, “I left the conference feeling both inspired and grounded. The conversations I had are ones I will carry with me. They reinforce why this work matters and remind me that at the center of everything we do are people navigating incredibly complex and personal journeys.”

And that work starts, and continues, with connection.