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 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…
Read MoreFrontotemporal Lobar Degeneration: Moving Forward
Frontotemporal dementias are less well known than Alzheimer’s disease but account for over half of the cases of dementia in people younger than 65 years. The last few years have witnessed rapid developments in the understanding of this group of diseases, particularly in terms of their genetic underpinnings and imaging characteristics. The 14th Annual Nantz…
Read MoreThe Lived Experience of FTD: Managing the Emotional Impact of Job Loss in FTD
When someone is diagnosed with FTD, it is almost guaranteed that they will eventually have to leave their job, usually long before they are ready to do so. The abrupt end of one’s career can cause depression (our jobs contribute significantly to our sense of self-worth) and stress (how will I pay my bills now?).…
Read MoreRemember Me Podcast Discusses Grief with AFTD Staff in Recent Episode
In a special bonus episode of the “Remember Me” podcast, AFTD Support & Education Director Esther Kane, MSN, RN-CDP, and Support Services Manager Sarah Lopata, MS joined hosts Rachael Martinez and Maria Kent Beers, both former FTD caregivers, to talk about grief and the FTD journey. Everyone Experiences FTD, and Grief, Differently FTD disorders are…
Read MoreCME Webinar: At the Intersection of FTD and the Law
FTD can present with executive dysfunction, impulsivity, loss of empathy, apathy and disinhibition. At times, these symptoms can lead to interactions with police, whether responding to an incident at home or in the community resulting in an arrest. This webinar will highlight what we know about the incidence of these interactions, discuss what FTD…
Read MoreAFTD Webinar: Paving the Path Forward — Advancing AFTD’s Public Policy Priorities
Families living with FTD have significant unmet needs: access to quality dementia care, policies that are friendlier to unpaid caregivers, and a deeper public investment into disease-modifying treatments. In this webinar, the AFTD advocacy team and experts at the Washington, DC lobbying firm Innovation Policy Solutions explain how you can advance these and other critical…
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