Virtual Meet and Greet for People Affected by FTD in Las Vegas, NV, and Surrounding Areas
Join and learn from others who understand the FTD journey at this virtual AFTD Meet & Greet event for people in Las Vegas and the surrounding area, hosted by AFTD Volunteers Crystal Keene and Marc Olson, on November 1. RSVP by emailing Crystal or texting 702-622-1199, including your name and email address for the Zoom link.…
Read MoreAdvancing Hope: AFTD Helps Organize C9orf72 Prevention Trial Workshop
A recent publication, Design considerations for C9orf72 disease prevention trials, arose from a two-day workshop that was led by Adam Boxer, MD, PhD, (UCSF) and Michael Benatar, MD, PhD, (University of Miami) and highlights the tools needed to design a clinical trial where therapeutic approaches would be applied during the earliest stages of neurodegenerative diseases…
Read MoreDear Helpline: What Comes After an FTD Diagnosis?
When a doctor first says the words frontotemporal degeneration (FTD), everything changes. Some describe it as feeling like the ground drops out from under them — fear, grief, and endless questions fill the space where answers should be. AFTD first published The Doctor Thinks It’s FTD: Now What? in 2013 to support families newly receiving…
Read MoreFTD Research Center Lab Tour
Join AFTD Ambassador Dawn O’Gara for a tour of the Frontotemporal Dementia Research Center at the RNA Therapeutics Institute of the University of Massachusetts Chan Medical School on October 15 at 12:00 PM. The guided tour will include insights into current research, a meet and greet with the research team, and a complimentary lunch with…
Read MorePartners in FTD Care: Genetic FTD Trials Update – Approaching a Phase 3 Milestone
The FTD research landscape is on the verge of major developments. For the first time, a Phase 3 trial has been completed for a potentially disease-modifying treatment for genetic FTD, with results expected in the coming months, and a number of other trials are in the pipeline. As the data readout for this study approaches,…
Read MoreComedian Shares Her FTD Caregiving Journey on Podcast
Obviously there’s nothing funny about an FTD diagnosis—even for someone who makes their living finding the humor in everyday life. But Kelsey Cook, a nationally touring comedian known for her specials on Hulu and YouTube, has a unique perspective as a long-distance caregiver for her mother, who was diagnosed with FTD in 2020. Cook recently…
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