The AFTD

The former talk show host Wendy Williams was diagnosed with FTD last year, her care team announced in a Feb. 22 statement. “In 2023, after undergoing a battery of medical tests, Wendy was officially diagnosed with primary progressive aphasia and frontotemporal dementia (FTD),”…

Sam Leverson hosted a special “Dad Rock” themed Father’s Day fundraising spin class to honor his father, Sven, who is living with FTD. “Through the pain, I’ve found strength in sharing our story and turning that heartbreak into action. Riding with my community for a cause that…

🧠 This #WorldBrainDay, we’re highlighting one of the most impactful ways to advance research in frontotemporal degeneration (FTD): brain donation. Brain tissue from people with and without FTD is essential to developing treatments and diagnostic tools. While the decision can be…

AFTD offers trusted, practical booklets to help individuals and families better understand FTD and navigate its challenges. From receiving a diagnosis to coping with grief or understanding genetics, these resources are here for you. 📚 Access them all at:…

Shana Dodge & Penny Dacks are on the ground at #AAIC2025! Visit Booth 521 to learn how the FTD Disorders Registry supports your research with data, cohort tools & recruitment resources. Let’s move #FTDResearch forward together! #EndFTD #FTD #DementiaResearch

An article summarizing the extensive discussions on #digitalhealth tools for #FTD that took place at AFTD’s 2022 Holloway Summit was published in @alzdemjournals Click here to learn more: bit.ly/3IAubg9

🧬 On Genetic Testing Action Day, we’re sharing an important message: Genetic counseling and testing should be offered to anyone diagnosed with FTD. A new Neurology article co-authored by AFTD’s Kim Jenny underscores how understanding the genetic causes of FTD can lead to…

Cuts to federal programs are putting crucial support at risk. Together, we can raise our voices to protect them. Join AFTD’s Advocacy Webinar on July 31 to learn how to connect with legislators and tell your story in a way that makes a difference. 📅 RSVP here:…

After losing his wife Maria to FTD, AFTD Ambassador Dan Moser found a new purpose: advocating for dementia caregivers. In a recent interview, Dan shared how his experience as a caregiver and a social worker inspired his work supporting others impacted by FTD. Today, he leads a…

Joe, co-facilitator for a support group, first joined as a care partner for his wife, Jackie. 💝 With a gift today, you will join Joe and a community empowered to ensure resources like AFTD’s support group network are available to those who need them: bit.ly/45csi1X

Can FTD-linked genes shape brain development before symptoms appear? A new study is exploring this question in families affected by genetic #FTD. Now enrolling across Canada and Europe. ftdregistry.org/press/new-stud… #endFTD #FTDResearch

🎥 A new PBS documentary, Caregiving, executive produced by Bradley Cooper, brings national attention to the U.S. caregiving crisis. It features the powerful story of Malcoma Brown-Ekeogu, who cares for her husband, living with FTD. Her experience reflects the challenges many…

Planning summer travel with someone living with FTD? ☀️✈️ Care partners from AFTD’s community shared real-life tips, from using Sunflower Lanyards to packing daily essentials. 💼 📲 Tap through this post for practical advice. For more caregiver tips, please email…

Whether you’re living with FTD or supporting someone who is, your voice matters. Join AFTD’s free webinar on July 31 at 3 p.m. ET to learn how to prepare for meetings with lawmakers, share your FTD journey with confidence, and make a real impact. 🔗 Sign up today:…

Why does longitudinal data matter in #FTDresearch? Tracking changes over time helps researchers understand how the disease progresses and how to treat it more effectively. See how your data makes a difference: ftdregistry.org/press/the-role… #FTD #endFTD

"It is important to recognize that even among individuals with the same FTD diagnosis, the progression and symptom mix can vary greatly." In this clip from the FTD 101 session at AFTD's 2025 Education Conference, Esther Kane, AFTD's Support & Education Director, explains how FTD…

FTD doesn’t just change lives. It upends careers, relationships, and families. That’s why awareness matters so much. Last year, Food for Thought hosts raised over $230,000 to support AFTD’s mission. This fall, you can help us go even further. Whether you bake, host, or…

We are less than a month out from Driving Hope Colorado! ⛳ Join us on the links, as a sponsor, or just for dinner and a spectacular view at the Colorado National Golf Club on August 10: bit.ly/3GGvDgv

AFTD Advocates are leading the way to raise awareness ahead of World FTD Awareness Week 2025 (September 21–28), and we’re excited to share our progress so far. 🏛️ Resolutions passed in: New York, Delaware, Louisiana, Montana, Tennessee, Oklahoma, Virginia, and Illinois 📜…

AFTD held its first-ever Genetic FTD Symposium to address the growing need for answers, guidance, and connection among families affected by inherited forms of FTD. From understanding genetic risk to clinical trial updates and powerful stories of advocacy, this event marked an…

“You get so paranoid. Any kind of disordered thinking or forgetting things, you think, oh, this is it.” In a recent episode of WUNC’s Embodied podcast, brothers Ansel and Cosmo open up about living with the MAPT gene mutation that causes FTD, the same disease that affects their…