Advocacy Update: Federal Dementia Legislation Scheduled to Expire in 2025
The scientific understanding of FTD has increased more in the past 10 years than in the previous 100. At AFTD’s 2023 Education Conference in May, Dr. Bruce Miller of the University of California, San Francisco predicted that “we will see effective therapies for the different forms of FTD” within the next decade, and just this…
Read MoreAdvancing Hope: AFTD’s Director of Research Engagement Attends NORD Summit in Washington, DC
AFTD Director of Research Engagement Shana Dodge, PhD, attended the National Organization for Rare Disorders (NORD) Breakthrough Summit, held October 16 and 17 in Washington, D.C. NORD is an advocacy organization dedicated to individuals with rare diseases and is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research,…
Read MoreStudy Evaluates Brain-Atrophy Rates in Genetic FTD Carriers
A study published in the journal Neurology evaluates the brain degeneration or atrophy rates of presymptomatic carriers of mutations that can cause genetic FTD. Determining the relative age at which brain atrophy in genetic forms of FTD begins to deviate from normal aging patterns is essential to find the best starting point for treatment, the…
Read MoreDecember 16: In-Person Meet & Greet in Boulder, CO
Join and learn from others who understand the FTD journey at this in-person AFTD Meet & Greet event in Boulder, Colorado on December 16, starting at 2 p.m. MT. Download this flyer to learn more, and share it with others who would benefit from this event. To RSVP or ask questions about the event, contact…
Read MoreBoulder, CO — In-Person Meet & Greet
Join and learn from others who understand the FTD journey at this in-person AFTD Meet & Greet event in Boulder, Colorado on December 16, starting at 2 p.m. MT. Download this flyer to learn more, and share it with others who would benefit from this event. To RSVP or ask questions about the event, contact…
Read MoreAFTD Volunteer and Former FTD Care Partner Discusses Importance of Self-Care in Podcast Interview
Corey Esannason, a former AFTD Ambassador, emphasized the need for self-care for FTD care partners and shared her insights as a yoga practitioner, care partner, and AFTD volunteer in an interview on the Yoga Magic podcast. In the interview, Esannason recalled how her mother developed FTD symptoms while she was navigating college and starting her…
Read MoreGuest Feature: Heal the Heart, Hold Up the Truths, and Find a Way
The FTD journey an emotional experience filled with grief and frustration, but it is one punctuated by moments of happiness, love, and connection. The following essay and poems by Sandy Moss Moder that capture the intense emotions of her experiences with her husband’s FTD, and the impact it left on her. The disease called anger…
Read MorePerspectives in FTD Research Webinar: Why PSP and CBS Clinical Trials Matter
Progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS) are FTD disorders that primarily affect movement and are sometimes called atypical parkinsonism. In this Perspectives in FTD Research Webinar, presented jointly by AFTD and the FTD Disorders Registry, Dr. Anne-Marie Wills, director of the CurePSP Center of Care at Massachusetts General Hospital, explores what PSP and…
Read MoreVolunteer Update: Hosting an Information Table Event
Hosting an information table on behalf of AFTD gives our volunteers a perfect way to bring awareness to their hometowns. AFTD volunteers can use information tables to engage, educate, and inform their communities about FTD, as well as provide AFTD materials and resources. Table settings can happen at events such as health and wellness fairs,…
Read MorePilot Study Evaluates Virtual Coaching’s Ability to Help FTD Care Partners with Self-Care
A pilot study published in the journal Alzheimer’s & Dementia: Translational Research and Clinical Interventions tests if the remote support program “Virtual Caregiver Coach for You” (ViCCY) was effective in helping care partners of people with behavioral variant FTD (bvFTD) maintain better self-care habits. The study was co-authored by AFTD grant recipient Lauren Mossimo, PhD,…
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