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The most common dementia for those under 60?

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News & Events

AFTD Educational Webinar: Person-Centered Care for Behavioral Variant FTD

The symptoms of behavioral variant FTD (bvFTD), the most common FTD disorder, include impaired executive functioning and social comportment. Caregivers of persons with bvFTD face a unique set of challenges, including young age, competing life demands such as work and raising children, lack of public awareness about FTD, and limited supportive resources. After a diagnosis,…


AFTD Research Engagement Director Presents Findings on Latinos and FTD Diagnoses in Interview

AFTD Director of Research Engagement Shana Dodge, PhD, presented data suggesting that obtaining an FTD diagnosis can be more difficult for Latino Americans in a June 4 interview with KJZZ, a Phoenix-based National Public Radio member station. Drawing from data originally gathered for the FTD Insights Survey, conducted by AFTD and the FTD Disorders Registry…


Unique FTD Caregiving Story Detailed in “Atavist” Article

The story of a literature professor who received FTD care in his last years from a previously incarcerated person he had befriended while co-running a prison arts program was recently recounted in the Atavist, an online publication focused on long-form journalism. The professor, Buzz Alexander, co-founded the University of Michigan’s Prison Creative Arts Project (PCAP)…


Sodium Selenate Could Be Promising Treatment for bvFTD, Study Suggests

Scientists from Monash University in Australia are investigating whether the dietary supplement sodium selenate could be a useful treatment option for some persons living with behavioral variant FTD (bvFTD). In a recent study published in Alzheimer’s and Dementia: Translational Research and Clinical Interventions, researchers presented findings from a small, uncontrolled, preliminary clinical trial. Sodium selenate…


AFTD Senior Director of Scientific Initiatives Discusses FTD and ALS at 2022 Target ALS Annual Meeting

AFTD Senior Director of Scientific Initiatives Penny Dacks, PhD, discussed the overlapping disease pathology between ALS and FTD during an interview conducted at the 2022 Target ALS Annual Meeting, held May 3-5 in Cambridge, Massachusetts. During the conversation with Target ALS Director of Communications Steve Schonberg, available to watch on the Target ALS YouTube channel,…


Help & Hope #86

Issue #86: May 2022 In this issue you can learn how to access 2022 Education Conference recordings on our YouTube channel, gain understanding about an FTD-ALS diagnosis, learn about upcoming Independent Events supporting AFTD’s mission, meet our AFTD-Team Athlete of the Month, get progress updates on projects we’ve co-funded with Target ALS, read words of…


ALS Awareness Month: Understanding an ALS with FTD Diagnosis

May is ALS Awareness Month, a time to raise awareness about amyotrophic lateral sclerosis (ALS), and during this month, AFTD is raising awareness around an ALS with FTD diagnosis. ALS and FTD share an overlapping disease pathology. The C9orf72 gene is the most common gene that causes familial FTD, ALS, and ALS with FTD. As…


Model Discusses FTD Advocacy in “Sports Illustrated” Article

Model and FTD caregiver Nicole Petrie discussed why she’s spreading FTD awareness in a recent Sports Illustrated article. “I have dreamed of shooting for [Sports Illustrated] since I started modeling, but the timing has never seemed more perfect to submit before than it did this year…after over one million people started following me and my…


FTD Insights Survey Data Presented at Latinos & Alzheimer’s Symposium

FTD data focused on the perspectives of Latino Americans living with and impacted by FTD was presented at the third Latinos & Alzheimer’s Symposium. FTD Disorders Registry Director Dianna Wheaton, MS, PhD, CHES, virtually presented a poster titled “Perceptions of Frontotemporal Degeneration Among Latino Americans: A Sub-Cohort Assessment of the FTD Insights Survey” at the…


Activist Living with FTD Discusses Dementia Advocacy in Asia in “Being Patient” Interview

Emily Ong, who lives with FTD, discussed her efforts to combat the challenges of dementia advocacy in Asia in an April 20 Being Patient  “LiveTalk” interview. Ong, who lives in Singapore, spoke about receiving an FTD diagnosis at age 51 after a series of misdiagnoses. She told Being Patient about the onset of her dementia…


AFTD 2022 Education Conference Session Recordings Now Available on YouTube

Did you miss the AFTD Education Conference? Want to share a session that you found informative? Recordings from this year’s Conference are now available on AFTD’s YouTube channel. We encourage you to watch the recorded sessions from the Education Conference for the latest FTD information and practical strategies for handling the FTD journey, delivered by those…


AFTD CEO Discusses FTD and ALS at 2022 Target ALS Annual Meeting

AFTD CEO Susan L-J Dickinson, MSGC, talked about FTD and its connection to ALS during an interview conducted at the 2022 Target ALS Annual Meeting, held May 3-5 in Cambridge, Massachusetts. During the conversation with Target ALS Director of Communications Steve Schonberg, available to watch on the Target ALS YouTube channel, Dickinson defines FTD and…


Neurofilament Light Potentially Useful as FTD Biomarker, Study Finds

Neurofilament light (NfL), a recognized biomarker linked to neurodegeneration, has been proven to be a useful blood-based biomarker in identifying FTD, a recent study has found. Researchers from the Mayo Clinic in Florida and members of ALLFTD, the multi-site North American consortium of FTD-focused research centers, confirmed the efficacy of NfL biomarkers in the FTD…


Help & Hope #85

Issue #85: April 2022 In this issue you can learn how to access 2022 Education Conference recordings online, discover resources for secondary care partners and caregivers, sign up to participate in our 2022 Race Season, meet our AFTD-Team Athlete of the Month, get information about participating in an FTD research study, read words of encouragement…


Persons With End-Stage Dementia May Have Difficulty in Receiving Hospice Care, “Washington Post” Reports

Hospice stays for persons with FTD or other dementias could be harder to access through Medicare if their disease progression is classified as stable, the Washington Post reported in a recent article. The Mar. 26 article explains the findings of a recent study that discovered that about five percent of hospice patients who have dementia…


“Vogue” Covers AFTD’s 2022 Hope Rising Benefit

(L-R: AFTD CEO Susan L-J Dickinson, AFTD Board member Donald E. Newhouse, Hope Rising Benefit Chair David Zaslav, Hope Rising Host Paula Zahn) AFTD’s 2022 Hope Rising Benefit returned on March 30 for its first in-person event since 2019, and was subsequently featured in an article that appeared on the website of Vogue. Vogue’s online…


AFTD Hope Rising Benefit Convenes Hundreds in NYC

(L-R: AFTD CEO Susan L-J Dickinson, Hope Rising Benefit Chairs David Zaslav and Anna Wintour, AFTD Board member Donald E. Newhouse, Hope Rising Host Paula Zahn, Hope Rising Benefit Vice Chair Kathy Newhouse Mele, AFTD Board member Beth Walter) Last night, more than 380 people gathered in New York City to mark the 2022 Hope…


Perspectives in FTD Research Webinar: Amplifying Your Voice in FTD Research — Why Am I Asked So Many Questions?

When studying FTD, researchers ask a lot of questions. Research participants may find themselves thinking, “Why do you need to know all this information?” This Perspectives in FTD Research webinar, presented by AFTD and the FTD Disorders Registry, explains why this information is gathered and how it is used by researchers seeking effective FTD treatments.…


Novelist Julie Otsuka Shares Mother’s Journey with FTD on “Fresh Air” Podcast

Best-selling novelist Julie Otsuka discussed how her mother’s FTD diagnosis inspired the main character of her new novel The Swimmers in a recent episode of NPR’s Fresh Air podcast. Otsuka joined Fresh Air’s host Terry Gross for the show’s Feb. 22 episode, in which she shared her mother’s story of living with FTD (which she…


“Sports Illustrated” 2022 Swim Search Finalist Raises FTD Awareness in Honor of Mother

Model Nicole Petrie is raising national FTD awareness and using her modeling career to be “a voice for caregivers all over the world” after being named a 2022 Sports Illustrated Swim Search program finalist. Petrie is one of the 13 finalists vying for a chance to be chosen as the “Rookie of the Year” for…


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