Evento comunitario de cuidadores de Duke
El embajador de la AFTD, Jerry Lazarus, y el ex miembro de la junta de la AFTD y facilitador del grupo de apoyo, Paul Lester, serán los anfitriones de una mesa de expositores de la AFTD en el evento comunitario de cuidadores de Duke en Durham, Carolina del Norte. Este evento en persona ofrece información de expertos y formas de conectar a los cuidadores con servicios esenciales y sistemas de apoyo.
Leer másAvanzando en la esperanza: el director de participación en investigación de la AFTD asiste a la conferencia Cure VCP
Shana Dodge, PhD, AFTD’s Director of Research Engagement, spoke at the 2023 Cure VCP Connections Conference, held July 20-22 in Las Vegas. VCP disease, also called VCP-associated multisystem proteinopathy or inclusion body myopathy with early-onset Paget disease and frontotemporal dementia (IBMPFD), is a genetic disease that can affect the muscles, bones, nerves, and brain. Approximately…
Leer másCaracterística invitada: Esa imagen, esa película, esa canción – Conectando con mi papá más allá de FTD
FTD can distort one’s personality and behavior in unpredictable and upsetting ways, and it can be hard to remember who they were. But often, the “true” self of the person diagnosed – their interests, mannerisms, quirks, and passions – remain intact, albeit deeply buried. Journalist and writer Alison McCook wrote the following essay for Help…
Leer másSeminario web de la AFTD: FTD genética: realizar pruebas o no realizar pruebas
La decisión de conocer el riesgo genético de desarrollar DFT es muy personal. Los resultados de las pruebas de una persona pueden revelar información no solo sobre su propio estado, sino que también pueden arrojar luz sobre el riesgo de otros miembros de la familia de desarrollar DFT. Pero muchos estudios y ensayos clínicos actuales sobre DFT requieren participantes con genes específicos. Ahora más de…
Leer másAFTD y Denali Therapeutics analizan la asociación con Takeda Pharmaceuticals para desarrollar terapias centradas en FTD
Recently, members of the Denali Therapeutics team provided insights into their work and partnership with Takeda to develop a therapeutic to treat FTD-GRN (Frontotemporal Dementia caused by GRN gene mutation) and shared what inspires them to engage in neurodegenerative disease research. Could you share your company’s approach to developing an FTD-focused therapeutic? Denali is…
Leer másUn estudio evalúa la viabilidad de la aplicación móvil de ALLFTD para recopilar datos de diagnóstico de FTD
A study published in the journal Alzheimer’s and Dementia evaluates whether a mobile app developed by the multi-site FTD research consortium ALLFTD can help users record and transmit scientifically acceptable diagnostic data for FTD. FTD’s symptoms can make travel to medical and research facilities difficult, especially for those who live in remote, rural areas. This…
Leer másVivir bien con PPA
“Living Well with PPA” is a six-week online support program designed to provide a safe space so that people newly diagnosed with primary progressive aphasia can cope with their diagnosis together. Each interactive one-hour session will provide an outlet to learn and find support with others in the same situation. Participants will: Learn more about…
Leer másArtículo STAT explora la conexión entre FTD y la creatividad visual
An article published by STAT explores the connection between the onset of FTD and a spike in visual creativity that a small percentage of people with the disease experience. The article introduces Carol Spence, a woman diagnosed with FTD who experienced a surge in creativity as the disease progressed. Already a talented crafter who made…
Leer másActualización de promoción: Los embajadores de la AFTD ofrecen sus ideas en la reunión de la NAPA de julio
At the most recent meeting of the National Alzheimer’s Project Act (NAPA) Advisory Council, AFTD Ambassadors Katie Zenger and Terry Walter shared their experiences to help educate federal officials on the needs and concerns of people affected by FTD. NAPA was passed in 2011 to address the needs of families affected by dementia and to bring coordination and focus…
Leer másInforme reciente de CBS analiza el vínculo entre FTD y la creatividad con el Dr. Bruce Miller
A report recently aired by KPIX in San Francisco highlights the spike in creativity that has been observed in a small percentage of people with FTD. Bruce Miller, MD, of the University of California, San Francisco, and playwright Jake Broder, creator of the play UnRavelled, shared insights into the phenomenon with reporters. For over two…
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