Points de vue du FTD : surmonter les obstacles au diagnostic, aux soins FTD et à la participation à la recherche auxquels sont confrontés les Noirs/Afro-Américains
En 2011, les chercheurs estimaient qu’il y avait entre 50 000 et 60 000 cas de DFT aux États-Unis. Aujourd’hui, les chercheurs estiment cependant que ce chiffre est sous-estimé. L’une des raisons en est le manque notable de représentation de populations diverses dans la recherche sur la DFT, comme la communauté noire/afro-américaine. Les recherches sur l’expérience des Noirs/Afro-Américains sur la DFT…
Lire la suiteLa FDA accorde la désignation de thérapie révolutionnaire à la thérapie FTD expérimentale
The U.S. Food and Drug Administration (FDA) has granted a “breakthrough therapy designation” to latozinemab, an experimental treatment for FTD caused by a GRN genetic mutation. The drug is being developed by Alector in partnership with biopharmaceutical firm GSK. “With this designation, we look forward to continued productive conversations with the FDA, recognizing the unmet…
Lire la suiteDes chercheurs britanniques découvrent comment bloquer les protéines toxiques associées à la FTD et à la SLA
Researchers at the University of Sheffield have discovered how to prevent the production of toxic repeat proteins that cause the death of nerve cells in neurodegenerative diseases like FTD and ALS. The study was centered specifically around FTD caused by a mutation in the C9orf72 gene, FTD’s most common genetic cause. In most people, the…
Lire la suiteChère ligne d'assistance : Que rechercher lors de l'examen des soins en établissement pour une personne atteinte de FTD
Dear HelpLine, We have reached the difficult decision to look for long-term facility care for my sister, and I feel overwhelmed because I don’t know what to look for or where to start. What things should I consider when trying to find a facility for her? The decision to begin looking for professional and…
Lire la suite« Le plus long au revoir » : une femme du Montana partage le parcours FTD de sa famille dans une interview
Krista Payzant of Montana characterized FTD as a thief that “strips the person of who they are” in an interview published in November by the news station KRTV3. Sharing the experiences of her FTD journey with her husband, Justin, Payzant highlights the challenges of diagnosis and living with FTD, as well as the need for…
Lire la suite26 février 2024 : rencontre en personne à Fresno, en Californie.
Join and learn from others who understand the FTD journey at this AFTD Meet & Greet event, taking place in Fresno, California on Monday, February 26, starting at 6:00 p.m. PT. AFTD Ambassador Traci English will be hosting the event, which will take place in the Fig Meeting Room in the Fresno County Public Library…
Lire la suiteFresno, Californie Rencontre et accueil
Join and learn from others who understand the FTD journey at this AFTD Meet & Greet event, taking place in Fresno, California on Monday, February 26, starting at 6:00 p.m. PT. AFTD Ambassador Traci English will be hosting the event, which will take place in the Fig Meeting Room in the Fresno County Public Library…
Lire la suiteConférence Journey de la section Journey de l'Association Alzheimer de l'État de Washington
The Alzheimer’s Association Washington State Chapter is hosting its annual Journey Conference for care partners of persons with dementia. AFTD Ambassador Joanne Linerud will be hosting AFTD’s information table at the event. The conference will provide information and support to care partners of persons diagnosed with diseases such as FTD, Alzheimer’s disease, and other forms of dementia. Topics…
Lire la suiteLa sénatrice de l'État de New York, Michelle Hinchey, présente un projet de loi visant à créer un registre FTD de l'État
New York State Senator Michelle Hinchey introduced a bill on January 3 to create a statewide FTD registry that would document diagnoses. Senate Bill S7874 would require healthcare providers in New York to report diagnoses of FTD to the state Department of Health, which would then publish the collected data in the registry; the public…
Lire la suiteConférence des familles de la Nouvelle-Angleterre de l'Association Alzheimer
The Alzheimer’s Association is hosting a free virtual educational conference for those living with dementia, care partners, family members, and the general public March 1-2, 2024. Live translation to Spanish will be available on both days. The event offers the opportunity to hear from a panel of those living with dementia and care partners who…
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