The Association for Frontotemporal Degeneration

11/15/2025

What a race! ❤️🏃‍♀️🏃‍♂️

We’re filled with gratitude for everyone who joined The AFTD-Team at this year’s TCS NYC Marathon on November 2nd. Together, our runners raised an incredible $79,432 to advance AFTD’s mission — funding research, supporting families, and spreading awareness of FTD.

Thank you to all the runners!

11/14/2025

In 2002, Helen-Ann Comstock founded AFTD with a $1,000 personal gift, a small circle of caregivers, and a vision that no family should face FTD alone.

More than 20 years later, her legacy lives on through 55 staff members and thousands of volunteers and donors worldwide.

❤️ Honor Helen-Ann’s memory and support our work with a year-end gift today.

Join me in helping people affected by FTD. Together, we can support all on this journey. Together, we are paving the path forward to . https://giving.classy.org/campaign/669661/donate

11/13/2025

Civil rights icon Rev. Jesse Jackson has been diagnosed with progressive supranuclear palsy (PSP), a rare form of FTD he's been managing for over a decade.

🔴 Learn about his journey and this condition: https://bit.ly/47WeyZG

11/12/2025

“You’re still you.” ❤️

In this powerful message, AFTD's Persons with FTD Advisory Council member Bob Meddaugh shares his advice for others living with an FTD diagnosis.

Robert reminds us that while FTD can change many things, it does not define who you are, and connection and community can evolve.

👉 Click the link to find support today: https://bit.ly/4qAkX5e

11/11/2025

Vesper Bio recently announced positive topline results from its phase Ib/IIa clinical trial for VES001, a potential drug for FTD-GRN. Progranulin levels are up by over 95% in participants, a significant improvement from baseline.

➡️ Learn more: https://bit.ly/4qK4Wti

11/10/2025

Behind every person diagnosed with FTD is a care partner navigating an emotional and often isolating journey.

Join AFTD’s Healthcare Professional Webinar on Nov. 18 at 12 p.m. ET, featuring Stephanie Muskat, MSW, RSW, to learn how individual therapy can offer meaningful support for FTD care partners.

🎓 Earn CEC credit.
🔗 Register now: https://bit.ly/42Tbiwk

11/09/2025

After losing her dad to bvFTD and ALS, Liz Matthews found purpose in connection and now leads AFTD’s National Young Adult Support Group to help others do the same. ❤️

“I actually met other people who were my age and have been through the same situation… it completely changed my whole perspective.”

This National Family Caregivers Month, we honor the young people navigating caregiving and loss with courage and compassion, and remind you that you’re not alone.

👉 Click the link to join Liz and connect with others who understand: https://bit.ly/49qCGWo

11/08/2025

Caring for someone living with FTD can bring moments of connection and moments of exhaustion. It’s okay to ask for help.

This week’s Help & Hope highlights resources, respite options, and support networks designed to help care partners and caregivers find balance. Learn more: https://bit.ly/47DBL2s

11/07/2025

Carrie’s words embody one of the key priorities in AFTD’s 2025–2028 Strategic Plan: advancing awareness and advocacy to build a more understanding and supportive world for those impacted by FTD.

Through the voices of advocates like Carrie, we can drive meaningful change: one story, one conversation, and one act of service at a time.

🔗 Learn more about AFTD’s 2025–2028 Strategic Plan: https://bit.ly/3L90vrK

11/06/2025

Dawn Kirby’s daughter, Kara, was diagnosed with FTD at age 29.

In a recent podcast by the For Their Thoughts Foundation - Rethink Dementia, she shared her experience as a mother fighting for her daughter, her evolution as an FTD advocate, and her work with AFTD, and the importance of community support, perspective, and education.

👉 Learn more: https://bit.ly/48XHYIU

11/05/2025

Join AFTD’s next Healthcare Professional Webinar on Tuesday, Nov. 18 at 12 p.m. ET to learn how individual therapy can help care partners navigate the unique emotional challenges of FTD caregiving.

Led by Stephanie Muskat, MSW, RSW, founder of Compassion in Caregiving, this session offers strategies, insights, and continuing education credit (CEC).

🔗 Register now: https://bit.ly/42Tbiwk

11/04/2025

🧠 FTD is a progressive disease.

Over time, symptoms of FTD become more pronounced, affecting behavior, language, movement, and daily life.

While every journey is unique, one thing remains constant: families facing FTD deserve understanding, resources, and hope.

🔴 Learn more about what FTD is, its variations and their early signs, and how it progresses: https://bit.ly/47eFkMf