Dear HelpLine: Transitioning to Facility Care
Dear HelpLine, We have just made the difficult decision to move my mom into facility care not far from home. We are all new to this, what can we expect and what can we do to work with the facility to help them learn about FTD? The transition to facility care is a significant change…
Read MoreAdvancing Hope: AFTD and University of Pennsylvania Host FTD Workshop
On June 11, 2024, AFTD collaborated with the University of Pennsylvania Frontotemporal Degeneration (FTD) Center on the FTD Clinical Research Learning Institute (CRLI) Research Ambassador Program, a one-day virtual FTD workshop. The CRLI curriculum was adapted from the Northeast ALS Consortium (NEALS) program which was designed to empower people living with ALS and their loved…
Read More2024 Living With Dementia Conference
AFTD volunteer Amy Canavan will be hosting an information table at the 2024 Living With Dementia Conference in Syracuse, N.Y. Being held on September 18, 2024, from 8:00 AM to 4:00 PM EST, the event will feature local resources and support for people living with dementia in New York. To register, visit the Living With Dementia website. For more…
Read MoreAFTD 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…
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