Gene Therapy for FTD: What Do I Need to Know?
In the last several years, new clinical trials have begun for drugs that can potentially slow or stop the progression of FTD caused by specific genes. Gene therapy and gene editing technologies that have been available for other diseases and conditions hold promise for a treatment for FTD, but, as with all new medical interventions,…
Read MoreThe Lived Experience of FTD: Grief on the FTD Journey
The following article was written by members of AFTD’s Persons with FTD Advisory Council, who work to ensure that the insights and voices of people living with FTD help guide AFTD’s policies, programs, and services. The definition of grief is “a keen mental suffering or distress over affliction or loss; sharp sorrow; painful regret.” Grief…
Read MorePassage Bio Announces Hopeful Initial Data from Phase 1/2 Clinical Trial
Passage Bio released promising preliminary results from its phase 1/2 clinical trial evaluating an experimental treatment for FTD cases caused by a GRN genetic mutation (FTD-GRN). The “upliFT-D” trial is evaluating PBFT02, a gene therapy that uses an engineered virus (known as a “vector”) to deliver an un-mutated copy of the GRN gene. FTD-GRN is…
Read MoreTips & Advice: Navigating Apathy in FTD
A hallmark symptom of FTD, apathy can be particularly hard to deal with for persons diagnosed, care partners, and family members. Apathy manifests as an apparent loss of interest in things that used to have meaning to a person diagnosed; it could present as a lack of enjoyment during a holiday gathering, a decline in…
Read MoreAdvancing Hope: AFTD hosts FTD Social at the Society for Neuroscience Annual Meeting
The Society for Neuroscience (SfN), with nearly 35,000 members in 95 countries, is the world’s largest professional organization for brain researchers. SfN’s annual meeting provides a forum for scientists from around the globe to present the results of their research, discover new ideas, engage with colleagues, and learn about new tools and techniques they can…
Read MoreEditor Shares How Basketball Helps Him Bond with Friend Who Has PPA
Retired managing editor Lonny Cain of The Times (Ottawa, Ill.) shared in a recent article how basketball helps him communicate and continue to bond with his lifelong friend Randy, who is living with primary progressive aphasia (PPA). Cain notes that he can’t recall how the duo met, musing that Randy may have simply shown up…
Read More“We’re Just Regular People with an Illness,” Dementia Advocate with FTD Writes in Essay
In an essay published by Inside Ageing, Bobby Redman, a retired behavioral psychologist living with FTD, discusses the results of a survey by Dementia Australia. According to the survey, nearly one-third of Australians found persons living with dementia to be frightening. The figure increased from 23% over the last decade. Redman writes that, as a…
Read MoreVolunteer Update: Hosting a Meet & Greet Event
By hosting a Meet & Greet on behalf of AFTD, volunteers can bring together people affected by FTD in their local area and neighboring communities to share resources and support for the FTD journey ahead. At a November Meet & Greet hosted by AFTD Ambassador Sandra Gonzalez-Morett and AFTD volunteer Veronica Wolfe, attendees shared their…
Read MoreAdvancing Hope: AFTD Manager of Genetic Initiatives Attends National Society of Counselors Annual Education Conference
AFTD’ Manager of Genetic Initiatives Kim Jenny, MS, LCGC, attended the 2023 National Society of Genetic Counselors Annual Education Conference, which took place October 16-21. The conference kicked off with a symposium on ethical dilemmas that arise related to genetic counseling and genetic testing issues for FTD, ALS, and other neurodegenerative conditions, featuring a panel…
Read MoreJanuary 6, 2024: In-Person Meet & Greet in Leicester, Mass.
Join and learn from others who understand the FTD journey at this in-person AFTD Meet & Greet event in Leicester, Massachusetts on Saturday, January 6, starting at 10:30 a.m. ET. Email Dawn O’Gara at dogara@theaftd.org to RSVP. The event will take place from 10:30 – 11:30 a.m. at the Leicester Public Library (1136 Main Street).…
Read More
English 
Spanish (Mexico) 
French 
German 
Swedish 
Portuguese 
Italian 
Dutch 
Danish 
Polish 
Spanish (Spain)