The AFTD

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Did you know approximately one in five people diagnosed with FTD has a genetic cause, regardless of family history? That’s why community providers play a critical role in connecting families affected by FTD to genetic services. 👉 Learn more in April’s edition of Partners in FTD Care: bit.ly/47CD82e

A study published in Molecular Neurodegeneration sets out to find clues that could help detect or better understand #CTE, which shares some features with other disorders like #FTD. ➡️ Learn more: bit.ly/3NQDnzZ

Healthcare professionals and researchers play a vital role in improving recognition and care for people affected by FTD. The AFTD 2026 Education Conference offers opportunities to learn from leading experts, hear perspectives from people with lived experience, and connect with colleagues working across FTD research. Register today: bit.ly/4rZBY8u

Understanding genetic FTD can feel complex, but you don’t have to navigate it alone. ❤️ Join AFTD on April 14 at 4 pm for an open-format webinar with genetic counselor Krista Savage. Bring your questions about genetic testing, family risk, and available resources. 🔴 Sponsored by @Passage_Bio 👉 Sign up today: bit.ly/47YenO3

Did you know behavioral variant FTD is the most common form of FTD, accounting for about half of all cases? The hallmarks of bvFTD are personality changes, apathy, and a progressive decline in socially appropriate behavior, judgment, self-control, and empathy. 🧠 Learn more: bit.ly/40Y4b4n

What is disinhibition in frontotemporal degeneration❓ It refers to the inability to control or suppress an immediate, impulsive response to a situation. These changes include socially inappropriate behavior, loss of manners, and impulsive, rash, or careless actions. 🔴 Learn more: bit.ly/4tavt3r

@AviadoBio recently announced that it is expanding its ASPIRE-FTD clinical trial for an experimental gene therapy for FTD-GRN to a new six-person cohort. Learn more: bit.ly/4uFV06b

The California Senate Health Committee unanimously advanced SB 1047, a bipartisan bill to add FTD to the state’s Neurodegenerative Disease Registry. As Emma Heming Willis shared, this progress reflects the dedication of advocates and families working to raise awareness of FTD across California. 🔴 Learn more: bit.ly/4rSyR1N

The Treat FTD Fund RFP is seeking novel or repurposed therapies & devices in Phase 0–2 trials from #academic and #biotech teams worldwide to advance treatments of #FTD. Both #diseasemodifying and #symptomatic approaches encouraged. @AFTDHope Learn more: bit.ly/3Fs6dP6

FTD is a devastating disease that impacts thousands of families. 🧠 It’s the most common dementia for people under 60. ⏳ The average time to diagnosis is 3.6 years. 💰 The annual cost of FTD care is double that of Alzheimer’s. FTD has no cure, no FDA-approved treatment, and takes an immense toll on families. Raising awareness is the first step toward change. 👉 Learn more: bit.ly/4svP1PO

AFTD’s Education Conference is free and accessible because our community shows up. While sponsorships fund 37% of the conference, individual donors make the rest possible — helping provide free registration, travel assistance, and virtual access for people impacted by FTD. ❤️ Support the 2026 Education Conference today: bit.ly/4aB8x6X

Earlier this month, our VP of Patient Advocacy, Daniel Barvin, MBA attended The Association for Frontotemporal Degeneration’s Hope Rising Benefit in NYC. This event brought together advocates, researchers, and members of the FTD community united by a shared commitment to advancing awareness, research, and support for patients and families affected by #FTD. Events like Hope Rising highlight the strength of the community and the importance of continued collaboration as we work toward better, more effective treatments. For more: theaftd.org/hoperising26-e…

Join AFTD on April 14 at 4 pm for our “Ask a Genetic Counselor” webinar with Krista Savage. This open-format session will explore genetic testing, familial FTD, and how results may inform you and your loved ones. Open to anyone with questions, including people diagnosed and care partners. 🔴 Sponsored by @Passage_Bio 👉 Sign up today: bit.ly/47YenO3

We were honored to attend the #AFTD Hope Rising Benefit and stand alongside patients, advocates, caregivers, researchers, and leaders united in their commitment to the #FrontotemporalDementia (#FTD) community. Thank you, @AFTDHope, for a wonderful and meaningful evening.

AFTD Research team members recently attended the first FTD Gordon Research Conference, which brought together researchers from academia, industry, and government institutions to share emerging data and ideas. Meetings like this help advance collaboration and inform future research priorities. Learn more: bit.ly/3NheKwi

On March 12, nearly 500 members of the FTD community gathered for AFTD’s 10th annual Hope Rising Benefit, raising $2.1 million to support awareness, care, and research. The evening honored Emma Heming Willis and Bruce Willis with the Susan Newhouse & Si Newhouse Award of Hope. Emma also announced the launch of the Emma & Bruce Willis Fund for Dementia Research and Caregiver Support, with AFTD receiving its first gift. 🔴 Learn more: bit.ly/4sLanbQ

Frontotemporal degeneration is often misdiagnosed or not diagnosed at all. AFTD developed diagnostic checklists for bvFTD, PPA, FTD-ALS, and PSP to help identify red flags and support evaluation. 📋 Download the checklists: bit.ly/4bopil3

After losing his father and brother to FTD and seeing the disease affect other members of his family, Mike Brucklier has turned to marathon running as a way to support research and raise awareness. Since 2023, he has run two marathons for AFTD and, with support from his workplace and community, has raised about $41,000 for AFTD’s mission. 👟 Read now: bit.ly/4ur05iI