Guest Feature: The Story Behind the Story – Our Journey Through FTD and Why I Wrote “Welcome to the Honey B & B”
Novelist Melody Carlson drew from her family’s FTD story to write her latest book, Welcome to the Honey B & B, which will be released on March 4 by Baker Publishing Group. In the following article, she describes her late husband’s road to getting an FTD diagnosis and explains why she built a novel around…
Read MoreAFTD 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 highlights what we know about the incidence of these interactions, discusses what FTD symptoms are…
Read MoreAFTD Webinar: AFTD and You — Partners in Drug Development
How does a great scientific idea become an effective treatment? It’s a long and complicated process! Drug development involves many key players, including researchers, companies, regulators, funders, patient advocacy organizations like AFTD and, importantly, community members with lived experience of FTD. The field of FTD has made exciting progress in the past decade, with treatments…
Read MorePassage Bio Announces Interim Data for UpliFT-D Trial for FTD-GRN
Biotechnology company Passage Bio released interim data for its upliFT-D clinical trial for its gene replacement therapy for FTD-GRN and announced that it is on track to expand the trial to FTD-c9orf72. Data Shows PBFT02 Increases Progranulin Long-Term In FTD caused by an inherited GRN genetic mutation, production of the neuroprotective protein progranulin is suppressed,…
Read MoreBonnie Brae Classic
Tee up for a day of golf, camaraderie, and fun at the Bonnie Brae Classic with Zach Fenoglio and friends at Red Hawk Ridge Golf Club in Castle Rock, CO! The event kicks off with an 8:00 AM shotgun start, followed by lunch, a silent auction, and a raffle. Don’t miss the creative costumes that…
Read MoreAdvocacy Update: Protect FTD Research Today!
Calling all AFTD advocates – federal funding for FTD research is at risk, and we need your advocacy to protect it. Earlier this month, the National Institutes of Health announced that it will drastically change how its grants are funded. This abrupt reduction will slow progress in research focused on FTD and other diseases, as…
Read MoreMarch 13, 2025: Northern Fort Myers, FL In-Person Meet & Greet
Join and learn from others who understand the FTD journey at this in-person AFTD Meet & Greet event, hosted by AFTD volunteer Julie Moore and starting at 10:00 a.m. on Thursday, March 13. The event will be held at Palmetto Landing Amenities Center and Clubhouse, located at 44304 Palm Frond Drive in Punta Gorda. Email…
Read MoreNorthern Fort Myers, FL In-Person Meet & Greet
Join and learn from others who understand the FTD journey at this in-person AFTD Meet & Greet event, hosted by AFTD volunteer Julie Moore. Email Julie at juliemoore2016@gmail.com to RSVP for this event. Download this flyer to learn more.
Read MoreFTD Researchers Call for Greater Focus on Diversity to Address Disparities in Care and Research
An article published in the journal Alzheimer’s & Dementia identifies gaps in current FTD research caused by disparities in access to proper dementia care and research centers, and outlines ways to address these obstacles in order to further diversity in FTD science globally. The article was a collaborative effort by FTD experts worldwide through the…
Read MoreThe 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;…
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