FTD in the News

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.

AFTD Quality of Life Grants

AFTD will pilot a new Quality of Life grant for persons diagnosed with an FTD disorder as part of the Comstock Grant Program. This grant helps persons diagnosed offset the cost of goods and services that improve their quality of life. For the pilot, AFTD will award 20 Comstock Quality of Life Grants and collect feedback to help make future improvements. Pending the results of the pilot, the Quality of Life Grants will be incorporated into AFTD’s overall Comstock grant program. Anyone living in the U.S. and Canada with a documented diagnosis of an FTD disorder will be eligible for one Comstock Quality of Life grant per fiscal year. For more information, contact the AFTD HelpLine at 866-507-7222 or by emailing info@theaftd.org.