AFTD Webinar: Advocate for Awareness — Working with Lawmakers to Highlight FTD
FTD advocates can help bring awareness to their communities by working with lawmakers to issue proclamations and resolutions designating a statewide FTD awareness week. But what are proclamations and resolutions, and how can advocates push for them? In this Advocacy Webinar, AFTD’s advocacy team explains the difference and shares the steps you can take to…
Read MoreASPIRE-FTD Phase 1/2 Clinical Trial Opens First US Site at Ohio State University
Biopharmaceutical company AviadoBio announced on July 1 that its ASPIRE-FTD phase 1/2 clinical trial has opened its first trial site in the United States, at Ohio State University’s Wexner Medical Center. The company is evaluating the experimental gene therapy AVB-101 as an intervention for FTD caused by a variant of the GRN gene. The GRN…
Read MoreJim Tobin Memorial Golf Tournament
AFTD Ambassador Dawn O’Gara will host the Jim Tobin Memorial Golf Tournament on September 14, 2024, with all proceeds donated to AFTD for Research and family care grants. The tournament will be held at Pine Ridge Country Club in North Oxford, MA. Cost is $125 per individual, $400 per foursome, or $30 for dinner buffet only.…
Read MoreAugust 8, 2024: In-Person Meet & Greet in Portland, Ore.
Join and learn from others who understand the FTD journey at this in-person AFTD Meet & Greet event in Portland, Ore., on Thursday, August 8. The event will take place at Paydirt (2724 N.E. Pacific St.) starting at 6:00 p.m. To RSVP, send a text message to 503-927-3328. Download this flyer to learn more.
Read MorePortland, Ore. Meet & Greet
Join and learn from others who understand the FTD journey at this in-person AFTD Meet & Greet event in Portland, Ore., on Thursday, August 8. To RSVP, send a text message to 503-927-3328. Download this flyer to learn more.
Read MoreTips & Advice: Finding Answers – FTD Research and You
When Damian McNamara, a staff writer for WebMD, learned that his cousin had been diagnosed with ALS and FTD due to a C9orf72 genetic variant, he began to wonder if he should undergo genetic testing. After all, his maternal grandmother and aunt also had ALS, and FTD research discovered that C9orf72 can cause either disorder,…
Read MoreAdvancing Hope: AFTD Attends C9orf72 FTD/ALS Prevention Trial Workshop
A one-day C9orf72 FTD/ALS Prevention Trial Workshop was held in June 2024. The workshop was led by Dr. Adam Boxer (UCSF) and Dr. Michael Benatar (University of Miami) and enabled by AFTD and the ALS Association. More than 30 scientific experts attended the meeting from academia, biopharma, advocates, nonprofit organizations and the US Food and…
Read MoreCare Partner Emphasizes the Benefits of Support from Others Who Understand FTD
Navigating the FTD journey is much less daunting when you have support from others who have lived with the disease themselves, Canadian care partner Mardi Denis said in an article published on the website of The Province, a Vancouver newspaper. Denis, a retired occupational health nurse, said that she was confused and concerned when her…
Read MoreOpinion Column Highlights Racial Disparities in Dementia Care and Need for Support
An opinion column published in the Los Angeles Daily News highlights healthcare-based racial disparities that often leave the Latino and Black/African American communities without proper dementia care. Author Patricia A. González-Portillo shares her family’s experiences with her father’s dementia to illustrate the gap in dementia care. González-Portillo’s father experienced symptoms for more than 20 years,…
Read MoreVolunteer Update: AFTD Welcomes New AFTD Ambassadors
Since the AFTD Ambassador Program began in 2019, our initial cohort of volunteer leaders has grown into an enthusiastic and highly motivated group working toward a future free from FTD. AFTD is pleased to welcome two new members to the group, bringing the program to a total of 20 Ambassadors. Zoy Kocian | Texas Zoy learned about…
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