What's New
Front Page
AFTD Appreciates Our Volunteers!
In recognition of National Volunteer Week 2018 (April 15-21), AFTD honors our amazing volunteers, who devote their time to furthering our shared mission of bringing help and hope to families across the U.S. and throughout the world.
FTD, the “Dementia That Is Often Misdiagnosed,” Is Spotlighted in Next Avenue
Frontotemporal degeneration is difficult to diagnose, can bankrupt families, and currently lacks any effective treatments. But while it is still too little known, awareness of the disease is growing, the online publication Next Avenue reported on April 9. The article…
Partners in FTD Care #23: Understanding and Managing Apathy
This new AFTD resource outlines various strategies for coping with apathy in FTD, including verbal cuing, tailoring activities to past interests, and planning structured activities. The issue also presents two views of apathy: one from a person diagnosed, and another…
Federal Actions Taken on FTD Research
Two recent developments will bring additional federal focus on FTD research. FTD has been added to a short list of diseases to receive research funding through the Department of Defense under the Congressionally Directed Medical Research Programs. Thank you to…
Help & Hope #37
Issue #37: February 2018 (originally published as The Gateway)
AARP Covers the Tragic FTD-Related Death of Deven Black
Deven Black died tragically in 2016, and while FTD was not the main culprit in his death, it was a menacing accomplice. AARP recently covered Deven’s story in depth, told from the perspective of his wife, Jill. The resulting article…
Maurice Hinchey, Former Congressman from New York, Dies of FTD
Maurice D. Hinchey, who represented New York State in Congress for 20 years, died on November 22 from frontotemporal degeneration. Earlier this year, Hinchey’s family announced that he was living with the primary progressive aphasia form of FTD. They said…
New Short Film Gives Firsthand Perspective of the FTD Journey
VJ & Chuck, a powerful new short film by Joseph Becker and ThinkFilm, Inc., captures FTD’s impact from the perspective of the person diagnosed. The film focuses on VJ and Chuck Anastasia, a married couple living in Rhode Island. In 2013,…
New York Publication Tells Rep. Hinchey’s FTD Story
Earlier this summer, the family of Maurice Hinchey announced that the former Congressman from New York has been living with the primary progressive aphasia variant of FTD, “gradually and insidiously eroding” a voice that had spoken up for environmental conservation, human…
Sacramento City Council Member Dies of PPA
Bonnie Pannell, who served on Sacramento’s city council for 16 years, died on June 27 from the effects of primary progressive aphasia. Pannell, who was 68, stepped down from her office in 2014, saying that her PPA had compromised her…