Study Investigates Incidence Rates of FTD and Other Young-Onset Dementias in Italy
A study published in the journal Diagnosis, Assessment & Disease Monitoring investigates the incidence of neurodegenerative young-onset dementias (YODs) like FTD in the Brescia province of Italy. As highlighted by the authors of the study, the focus of most services for persons affected by dementia are tailored to the needs of older people and are…
Read MoreAFTD Ambassador Shares Her Story on “All Home Care Matters” Podcast
AFTD Ambassador Debbie Elkins and AFTD Support and Education Director Esther Kane, MSN, RN-CDP, appeared on the podcast All Home Care Matters in July to discuss the changed nature of relationships following an FTD diagnosis, anticipatory grief, and dementia’s social stigma. A registered nurse, Elkins may seem as if she is better able to handle…
Read MoreInteractive Map Simplifies Search for Help on New AFTD “Find Support” Page
AFTD has just launched a new page designed to simplify your search for answers. We added an FTD Support Group and Diagnostic Center Locator, which includes a map that allows you to search anywhere in the United States, and clickable icons reveal the details for each location. The interactive map displays: Support Groups (local, regional,…
Read MoreAFTD Grant Recipient Discusses Gene Therapy for FTD-GRN on Canadian TV
In an interview with the Canadian Broadcasting Corporation, Dr. Simon Ducharme of McGill University in Montreal discussed his recent administration of an experimental gene therapy to mitigate the progression of FTD cases caused by a variant in the gene GRN. Forty percent of people diagnosed with FTD have one or more blood relatives who have…
Read MoreAFTD Volunteers Achieve FTD Awareness Week in 5 More States
In recent weeks, AFTD volunteers have successfully lobbied legislators to declare September 22-29, 2024, as FTD Awareness Week in Maryland, Ohio, Oklahoma, Tennessee, and West Virginia. They join New York, California, and Delaware, bringing the total of states recognizing FTD Awareness Week 2024 to eight. Additionally, AFTD advocates have petitioned lawmakers in at least 17…
Read MoreDear 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…
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