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Young-Onset Dementia impacting more than 1200 people

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More than one thousand people impacted by frontotemporal degeneration (FTD), the most common dementia under 60, came together to connect, learn, and engage with a community that understands the disease at the Association for Frontotemporal Degeneration’s (AFTD) first-ever hybrid Education Conference, on Friday, April 8.              

Persons diagnosed with FTD, care partners, caregivers, researchers, health care professionals, and industry experts attended the 2022 Education Conference, both at the BWI Airport Marriott near Baltimore, as well as virtually. Nearly 200 people attended in Baltimore for the first in-person conference experience since 2019, while more than 1,000 registrants from 29 different countries joined via livestream.

The day consisted of presentations focusing on the latest strides in FTD research, the diverse FTD care partner experience, and the language of dementia, presented by experts in the FTD/dementia field. Both in-person and virtual attendees were able to take part in interactive breakout sessions that took an in-depth look at the key aspects of the FTD journey.

AFTD’s Persons with FTD Advisory Council, a group of people living with FTD who help to inform AFTD’s work, shared their perspective on living with the disease. Later, AFTD Board member Rita Choula, MA, the director of caregiving at the AARP Public Policy Institute, delivered the conference’s keynote address, sharing her mother’s journey with FTD and how her family navigated the experience. Ms. Choula sent out a call for individuals and persons impacted by FTD to “be bold” in advocating for care, both for their loved ones and themselves.

AFTD founder Helen-Ann Comstock, AFTD CEO Susan L-J Dickinson, and AFTD Board chair David Pfeifer delivered the conference’s closing remarks, in which they reflected on the organization’s history as AFTD approaches its 20th anniversary.

Additional featured speakers at this year’s event included AFTD Medical Advisory Council member Chiadi Onyike, MD, MHS; David Irwin, MD, principal investigator of the Penn Digital Neuropathology Lab; Tania Gendron, PhD, of the Mayo Clinic in Florida; Angela Taylor, senior director of research and advocacy at the Lewy Body Dementia Association; and Laynie Dratch, ScM, CGC, of the University of Pennsylvania’s FTD Center.

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Editor in chief for eTurboNew is Linda Hohnholz. She is based in the eTN HQ in Honolulu, Hawaii.

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