FTD in the News

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 brings increased awareness to FTD and shows the importance of proper diagnosis and early intervention.

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 they went public with the story in order to “raise awareness [of FTD] and prevent people from being misdiagnosed.” After Hinchey made the decision to leave Congress in 2012, the Poughkeepsie Journal wrote that throughout his political career, he had been “forceful and unapologetic about his views, whether in the political majority or not.” Hinchey was 79.

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, VJ was diagnosed with FTD, a form of dementia that primarily affects movement, behavior, personality and language. The changes brought on by FTD have forced VJ and Chuck to restructure their entire lives. But through good days and bad, they are able to draw strength from their decades-long bond.

 

Contribute Your FTD Story to the Upcoming National Dementia Summit

World FTD Awareness Week starts in less than one week — on 9/24! In the lead-up, AFTD would like to let you know about an important way you can share your perspective with federal policymakers and healthcare researchers.

On October 16-17, the National Institutes of Health (NIH) will host the first-ever National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers. AFTD is proud to co-sponsor this two-day meeting along with the U.S. Department of Health and Human Services and many other private sector organizations.

You can help inform the researchers and policymakers planning the summit by sharing your experiences and the challenges you faced finding help and services. AFTD encourages you to tell your FTD story and clarify that not all dementia is Alzheimer’s.

If you choose to share your stories and experiences, simply email them to napa@hhs.gov, with “Care Summit Comment” in the Subject line. Your email will be included on the Summit Public Comments page, and shared with the Steering Committee. The organizers need to hear from people confronting FTD and other non-Alzheimer’s dementias in order for the summit to address the needs of everyone living with dementia.

Chicago Super Run Participants Walk and Run for FTD Awareness

When Chicago’s Frank Callea was diagnosed with the primary progressive aphasia form of FTD at age 54, the multi-decade Chicago Tribune technology executive vowed to make a difference, even as he stepped away from his professional life. This Saturday, he and his wife, Amy Bouschart-Callea, will join more than 40 friends, family members, fellow AFTD volunteers and AFTD staff at the Chicago Super Run 5K, running to raise FTD awareness. Click here for more information.