Front Page

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.

Prominent Utah Economist Donates Brain to FTD Research

Before he died of FTD earlier this year, influential economist Jeff Thredgold of Utah pledged to donate his brain to help advance our understanding of the disease. On August 4, KUTV, the CBS affiliate in Salt Lake City, aired a segment on Thredgold’s decision, featuring interviews with his family members and AFTD Board member Bonnie Shepherd, a Utah resident. Watch the segment by visiting the KUTV website.

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 rights, and economic opportunity for nearly four decades. Hinchey’s wife, Ilene Marder Hinchey, and his children went public with his disease in the hopes that his story can help “raise awareness and prevent people from being misdiagnosed.” An August 1 article published in the Chronogram, a publication based in New York’s Hudson Valley, details Hinchey’s story; AFTD CEO Susan L-J Dickinson is quoted throughout the article.

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 ability to do her job. “I don’t want to leave; my doctor told me I had to retire,” she said at the time. “My voice is gone.” Beloved by her fellow city council members, Pannell was described by one friend as a “protective mother bear” for her constituency and “one of the most effective council members we ever had.” Read more about Pannell in this Sacramento Bee article.