Studio indaga i tassi di incidenza della FTD e di altre demenze ad esordio precoce in Italia
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…
Per saperne di piùL'ambasciatrice AFTD racconta la sua storia nel podcast "All Home Care Matters"
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…
Per saperne di piùLa mappa interattiva semplifica la ricerca di aiuto sulla nuova pagina AFTD "Trova supporto"
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,…
Per saperne di piùIl beneficiario del sussidio AFTD parla della terapia genica per la FTD-GRN sulla TV canadese
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…
Per saperne di piùI volontari dell'AFTD partecipano alla settimana di sensibilizzazione sull'FTD in altri 5 stati
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…
Per saperne di piùGentile HelpLine: transizione al 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…
Per saperne di piùPromozione della speranza: seminario FTD ospitato dall'AFTD e dall'Università della Pennsylvania
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…
Per saperne di piùConferenza 2024 Convivere con la demenza
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…
Per saperne di piùWebinar AFTD: Sostenitore della consapevolezza: collaborare con i legislatori per evidenziare l'FTD
I sostenitori dell'FTD possono contribuire a sensibilizzare le loro comunità collaborando con i legislatori per emettere proclami e risoluzioni che designano una settimana di sensibilizzazione sull'FTD a livello statale. Ma cosa sono i proclami e le risoluzioni e come possono i sostenitori spingerli per ottenerli? In questo webinar di advocacy, il team di advocacy dell'AFTD spiega la differenza e condivide i passaggi che puoi intraprendere per...
Per saperne di piùLo studio clinico di fase 1/2 ASPIRE-FTD apre il primo sito negli Stati Uniti presso la Ohio State University
La società biofarmaceutica AviadoBio ha annunciato il 1 luglio che il suo studio clinico di fase 1/2 ASPIRE-FTD ha aperto il suo primo sito di sperimentazione negli Stati Uniti, presso il Wexner Medical Center dell'Ohio State University. L'azienda sta valutando la terapia genica sperimentale AVB-101 come intervento per la FTD causata da una variante del gene GRN. Il GRN…
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