The Lived Experience of FTD: FTD and Intimacy
In the following article, Anne Fargusson, RN, a member of the Persons with FTD Advisory Council, writes about intimacy and FTD. Intimacy can be an uncomfortable word. Years ago, when my husband and I were in premarital counseling, the therapist referred to it as “conjugation.” At the time, I had no idea what he meant;…
Read MoreVesper Bio Clinical Trial for FTD-GRN Enters Phase Ib/IIa
Danish biotechnology company Vesper Bio announced in January that its clinical trial for a potentially disease-modifying drug for FTD-GRN is proceeding to phase Ib/IIa. In FTD caused by an inherited GRN mutation, the production of the neuroprotective protein progranulin is suppressed. The protein sortilin contributes to the loss of progranulin by binding to it and…
Read MoreDear HelpLine: Home and Community Care Options
Dear HelpLine, My spouse has FTD. I have been caring for them in our home, and I’ve reached the point where I need more help. But I don’t even know where to begin to find what we need. Do you have any advice? Obtaining effective home and community-based FTD care services can be daunting. Know…
Read MoreDueling Pianos for AFTD
Join us at Dueling Pianos for AFTD, a fundraising and awareness event hosted by AFTD volunteers Guy Margolin and Lauren Pelaia. This event is sponsored by the Flying Ivories and the LVW Pickleball Club. All tickets MUST be purchased in advance. Seating is limited so buy early to reserve your spot! For more specifics (including…
Read MorePartners in FTD Care: Identifying and Describing Communication Difficulties Across the FTD Spectrum
Communication is a cornerstone of human interaction, enabling the exchange of ideas, the formation of connections, and the capacity to engage with new information. At its core, communication begins with the intent of sharing a thought or idea with another person. This intent is translated into language, a structured system of symbols and rules used…
Read MorePenn FTD Center Annual Familial Conference: Uncovering the Genetics of FTD/ALS
AFTD is a bronze-level sponsor of the 2025 Penn FTD Center Annual Familial Conference, which will focus on the genetics of FTD/ALS. It will address topics for people living with, or at risk of, a familial and/or genetic form of FTD/ALS. Attendees will have the chance to hear from genetic counselors, neurologists, and social workers…
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