The Lived Experience of FTD: Talk Therapy in FTD – Risks and Benefits
The following article was written by Anne Fargusson, RN, a member of AFTD Persons with FTD Advisory Council. You can learn more about Anne and her colleagues by visiting the council’s web page. Most persons diagnosed with FTD have encountered some form of talk therapy, even before they got diagnosed. Years ago, for example –…
Read MoreAn Evening for Caregivers
AFTD is attending An Evening for Caregivers, a special event for caregivers featuring Emma Heming Willis in conversation with Anderson Cooper. Panel discussions featuring caregiving experts will kick off the event, providing attendees with resources and information that can make a positive difference at all steps of the caregiving journey. AFTD will have an information…
Read MoreFerrer PSP Drug Receives Fast Track Designation from U.S. FDA
Spanish pharmaceutical company Ferrer announced that its experimental drug for progressive supranuclear palsy (PSP) has received a Fast Track designation from the United States Food and Drug Administration (FDA). Fast Track Designation Brings Closer Cooperation with FDA The FDA uses its Fast Track designation to help the development of a drug and expedite its…
Read MoreLeading FTD Expert Dr. Bruce Miller Interviewed on “Big Brains” Podcast
Bruce Miller, MD, was a recent guest of the University of Chicago podcast “Big Brains,” sharing his experiences observing people with FTD. He discussed the need for a new way to look at behavioral issues, and the importance of keeping our “social brain” healthy. Dr. Miller is a leading expert in FTD; he is a…
Read MoreAFTD Joins Lawmakers to Advance Dementia Awareness in California
Above, L-R: Emma Heming Willis, AFTD Ambassador Terry Walter, Calif. State Senator Roger Niello, and AFTD volunteers Jeanine Walter Misirli, MD, and Kristine Golden, PA-C SACRAMENTO, CA – The Association for Frontotemporal Degeneration (AFTD) and FTD advocates – including Emma Heming Willis, wife of actor Bruce Willis – will travel to the California State…
Read MoreDementia Action Alliance Publishes Updated Guide to Living with Dementia
The organization Dementia Action Alliance (DAA) has released an updated version of “Pathways to Well-Being with Dementia,” a manual of practical tools, strategies, and insights to support well-being with dementia. The guide is available at the DAA’s website for download as a PDF at no cost; hard-copy paperback copies can be ordered from the website.…
Read MoreAdvancing Hope: Early-Career Awardees of AFTD Research Grants are Making Strides!
Did you know that AFTD currently has six active research grant programs funding FTD research at all stages, from discovery research to clinical trials? Three of these programs are focused on early-career researchers, supporting career transitions that sustain future work in FTD. We wanted to share a flurry of recent research publications authored by early-career…
Read MoreAFTD Webinar: From Symptom Onset to Diagnosis — Improving the FTD Diagnostic Journey
FTD’s complex symptomology means it is often misdiagnosed. This webinar explores what we know about the diagnostic journey by reviewing current data from the FTD Disorders Registry, including common early symptoms, barriers to timely diagnosis, and opportunities to improve detection and referral pathways. A leading FTD expert, Dr. David Irwin, discusses the key components of…
Read MoreAFTD Grantee Study Assesses Protein Changes Which Could Help Track FTD Severity
A study published in Nature Aging looked at a large number of proteins in cerebrospinal fluid (CSF) to see if combinations of changes in these proteins could be used for indicating severity or presence of frontotemporal dementia (FTD) in the future. The research was led by Dr. Rowan Saloner, a current AFTD grant recipient, and…
Read MoreLate FTD Advocate Susan Suchan Spotlighted in New Documentary
Susan, a new full-length documentary about a woman diagnosed with FTD and the choices she and her family struggled with, is now available to stream. The film’s subject, Susan Suchan, was a tireless advocate on behalf of FTD awareness before her 2018 death, at age 60. Initially misdiagnosed with early-onset Alzheimer’s disease, Susan eventually learned…
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