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The Association for Frontotemporal Degeneration

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King of Prussia, PA
The Association for Frontotemporal Degeneration

AFTD envisions a world with compassionate care, effective support, and a future free of FTD.

AFTD is a 501 (c) (3) nonprofit, and our work is community-driven. Support our mission here: https://www.classy.org/give/381228/ #!/donation/checkout

11/01/2025

This November, AFTD recognizes the strength and resilience of everyone caring for a loved one with FTD. ❤️

We're kicking off National Family Caregivers Month by sharing 'Life After an FTD Diagnosis: What You Need to Know' — our updated booklet to help families navigate the journey with clarity and support.

📘 Download now: https://bit.ly/4hD4t8s

10/31/2025

AFTD now supports the recommendation that all people diagnosed with FTD be offered genetic counseling and testing, aligning with guidance from the National Society of Genetic Counselors (NSGC) FTD/ALS Working Group.

This evolution brings the FTD community closer to a future where everyone affected has equal access to knowledge, care, and emerging therapies, regardless of family history.

⚪ Learn more: https://bit.ly/4qAj6Nx

10/30/2025

After her FTD diagnosis, AFTD Persons with FTD Advisory Council co-chair Deb Jobe discovered an unexpected gift: art. What began with an adult coloring book grew into vivid, intricate pieces that fill her home with color.

Her story illustrates how creativity can emerge even amid challenge and how families and clinicians can nurture these moments of strength and self-expression.

🎨 Learn more: https://bit.ly/48TsCoQ

10/30/2025

Results from Alector Therapeutics’ Phase 3 trial for Latozinemab (AL001), designed for people with FTD caused by GRN variants, have raised important questions for many in our community.

Join AFTD’s Dr. Penny Dacks, Dr. Carmela Tartaglia, and members of the FTD community on Thursday, Nov. 6, at 3 p.m. ET for a live discussion about what these results mean and what’s next for FTD research.

🔗 Sign up now to attend:

10/29/2025

💬“Listening to other people go through feelings of loneliness, disbelief, and the horror of this disease, and comparing it to my own, has helped me. – Kathleen, AFTD Support Group Volunteer

Support groups offer connection, understanding, and the chance to both receive and give support.

👉 Learn more: https://bit.ly/3WlhARJ

10/28/2025

Caring for someone with FTD can take an emotional and mental toll.

Join AFTD’s upcoming Healthcare Professional Webinar on Nov. 18 at 12 p.m. ET, led by Stephanie Muskat, MSW, RSW, to explore how individual therapy can best support FTD care partners.

🎓 CEC credit available.
🔗 Register now:

10/27/2025

Dr. Steven Boeynaems, a researcher at Baylor College of Medicine and Texas Children's Hospital, describes his commitment to studying FTD long-term, applying skill sets gained throughout his career.

Dr. Boeynaems received an AFTD pilot grant in 2023, sometimes described as "seed funding" because it can support initial studies and discoveries which lead to further funding and lasting research programs in FTD.

Together with dedicated researchers and families, we’re building hope for a future with treatments and, one day, a cure.

10/26/2025

When someone living with FTD says, “I’m fine,” they may truly believe it. What can look like denial is often anosognosia, a neurological symptom that makes it difficult or impossible for a person to recognize their diagnosis or the changes it brings.

This week’s Help & Hope article explains how anosognosia differs from denial and offers practical strategies for care partners navigating this challenging reality.

👉 Learn more: https://bit.ly/4nlO9dq

10/25/2025

Here’s a huge shout-out to our incredible fundraisers who took it to the next level by raising funds and awareness! 🎉

Our fundraising volunteers, like Carrie, Sherlin, and Dawn, help drive research, raise awareness, and support families facing FTD, and you can too!

🔴 Click the link to get started: https://bit.ly/3JoKVrz

10/24/2025

This National Estate Planning Awareness Week (Oct. 20–26), learn how to navigate the legal, financial, and insurance steps that support quality of life and peace of mind.

From power of attorney and advance directives to financial and health coverage options, taking time now to put key plans in place helps reduce stress and uncertainty later.

Learn more: https://bit.ly/3JqiBVJ

10/23/2025

From chili contests to cookbook clubs, bake sales to beer tastings, all of our Food for Thought hosts served hope.

Together, we've honored those we've loved, remembered those we miss, and helped make FTD visible with each plate, story, and event held.

Thank you for making our 13th Food for Thought so incredible with your creativity and passion. Together, we've raised more than $148,000 and counting to advance AFTD's mission. Thank you to all our hosts, cohosts, supporters, and donors! ❤️

10/22/2025

Alector recently shared results from their Phase 3 clinical trial studying latozinemab (AL001) as a potential treatment for people with FTD caused by GRN gene variants. While the trial did not meet its intended clinical goals, it offered valuable insights that will guide future FTD research and treatments.

AFTD extends our deep gratitude to every person and family who participated.

➡️ Learn more about the results and what comes next for FTD-GRN research on our website: https://bit.ly/4opCafM

Address

2700 Horizon Drive, Suite 120
King Of Prussia, PA
19406

Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm

Telephone

+18665077222

Website

http://www.theaftd.org/

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