Dear HelpLine: Hyperorality
Dear HelpLine, My loved one is focused on eating sweets like cookies and candy bars, which is so different than how he used to eat. I’m concerned he’s not eating a healthy diet and is gaining weight. I’ve tried keeping sweets out of the house, but then he goes to the store to get them…
Read MoreResearchers Adapt Digital Intervention for Dementia Care Partners for FTD, Other Dementias
In a study published in the International Journal of Environmental Health and Research, researchers at Bangor University in Wales and University College London adapted a digital training resource for dementia care partners to reflect the specific needs and preferences of carers of persons with rare dementias such as FTD. The iSupport for Dementia program was…
Read MoreRecent Study Highlights Reliability and Validity of ALLFTD Mobile App for Diagnosis and Research
A study recently published in the journal JAMA Network Open highlights the reliability and validity of a digital assessment tool, the ALLFTD Mobile App (ALLFTD-mApp) for the remote diagnosis of FTD. Developed in partnership with Datacubed Health, the ALLFTD-mApp allows clinicians to measure cognitive function in a person’s own home using a smartphone, rather than…
Read MoreApril 30, 2024: In-Person New York City Meet & Greet
Join and learn from others who understand the FTD journey at this in-person AFTD Meet & Greet event at 5th & Mad (36th Street between 5th and Madison) on Tuesday, April 30, starting at 6:30 p.m. ET. To RSVP, send an email to Lindsay Feinberg at lindsay.feinberg@gmail.com. Download this flyer to learn more — and…
Read MoreNew York City Meet & Greet
Join and learn from others who understand the FTD journey at this in-person AFTD Meet & Greet event at 5th & Mad, in Midtown Manhattan, on Tuesday, April 30, starting at 6:30 p.m. ET. To RSVP, send an email to Lindsay Feinberg at lindsay.feinberg@gmail.com. Download this flyer to learn more — and be sure to…
Read MoreTerre Haute, Ind. Meet & Greet
Join and learn from others who understand the FTD journey at this in-person AFTD Meet & Greet event in Terre Haute, Indiana on Saturday, April 27, starting at 2:00 p.m. ET. To RSVP, send an email to AFTD Ambassador Dawn Kirby at dkirby@theaftd.org. The event will take place at Gingersnaps Coffeehouse & Cafe, located in…
Read MoreApril 27, 2024: In-Person Meet & Greet in Terre Haute, Ind.
Join and learn from others who understand the FTD journey at this in-person AFTD Meet & Greet event in Terre Haute, Indiana on Saturday, April 27, starting at 2:00 p.m. ET. To RSVP, send an email to AFTD Ambassador Dawn Kirby at dkirby@theaftd.org. The event will take place at Gingersnaps Coffeehouse & Cafe (located in…
Read MoreAFTD Partners with ALS Association to Support Advancing Digital Tools
Although FTD and amyotrophic lateral sclerosis (ALS) have long been considered distinct disorders, experts now recognize that the two disorders have much in common. Both can be caused by a defect in the c9orf72 gene and trigger similar pathological changes to the brain. In addition, symptoms of both disorders can occur in the same person,…
Read MorePerspectives in Research Webinar: Navigating Social and Legal Challenges in Familial FTD
Join us for a conversation with Prof. Jalayne Arias, a researcher focused on policy, ethics, and law, and genetic counselor Laynie Dratch as they discuss important considerations for families impacted by familial FTD. They will highlight some of the sociolegal challenges these families can face, and will explain the protections provided by federal laws like the…
Read MoreGuest Feature: Finding Support and Understanding on the Go with the Hidden Disabilities Sunflower
For persons diagnosed with FTD, simply existing in public can be challenging. FTD’s symptoms can cause difficulties while shopping, ordering food, or participating in social activities. Traveling – with its lines, security checks, crowds, and tight quarters – adds further complexity. Because FTD isn’t widely known, the public generally won’t be aware of the challenges…
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