The Association for Frontotemporal Degeneration

05/11/2026

❔ Did you know FTD and ALS can occur in the same person? This is known as FTD-ALS.

Symptoms can include changes in behavior, language, and movement.

The C9orf72 gene is the most common cause of both genetic FTD and genetic ALS.

🧠 Learn more: https://bit.ly/4sG74Ca

05/10/2026

This Mother’s Day, we honor the resiliency and compassion of mothers and care partners who continue to inspire progress to transform tomorrow.

Rachael Honeyfield shares what drives her to raise awareness of FTD in honor of her mom, Mary.

❤️ Make a gift today to honor someone you love and help advance FTD research: https://bit.ly/3PMaJ3E

Until 5/31, all gifts will be matched up to $25,000, thanks to AFTD’s Board Alumni.

05/09/2026

Not everyone is familiar with FTD, which can make a new diagnosis feel overwhelming.

AFTD’s Newly Diagnosed Guide gives steps to help you navigate what comes next—from understanding FTD and building a care team to planning for the future and finding support.

📝 Download the guide and share it with your loved ones: https://bit.ly/48yuWAv

05/07/2026

🧠 Today is National Brain Donation Awareness Day.

Brain donation plays a critical role in advancing research and helping us better understand FTD.

Through this generosity, researchers are able to study the disease more closely and move closer to future breakthroughs.

🔗 Learn more about brain donation and its impact here: https://bit.ly/41ZVgjg

05/06/2026

05/06/2026

🧬 Researcher and AFTD Medical Advisor Rosa Rademakers, PhD, received a 2026 Breakthrough Prize.

Congratulations, Dr. Rademakers and Dr. Bryan Traynor, on the award for your discovery connecting C9orf72 repeat expansions to and !

Learn more: https://bit.ly/4tH8NIW

05/05/2026

Real change starts with real voices. 🎤

By becoming an advocate for frontotemporal degeneration, you can help raise awareness, influence policy, and push for better care and research.

🗣️ You don’t need to be an expert—just willing to speak up.

Become an advocate here: https://bit.ly/42uONx1

05/03/2026

Anxiety is something that people living with FTD may experience on their journey. Recognizing it early and finding ways to manage it can make a big difference.

Chris Tann, a member of AFTD’s Persons with FTD Advisory Council, shares practical self-care strategies in the article ‘The Lived Experience of FTD: Managing Anxiety’.

💡 Read Chris’ full article here: https://bit.ly/494eAzS

05/02/2026

Thank you to everyone who joined us in Seattle and online for the AFTD 2026 Education Conference.

Over two days, people diagnosed, care partners, families, friends, healthcare professionals, and researchers came together to connect, learn, and engage.

We are especially grateful to Susan Dickinson for her 18 years of leadership and dedication to families affected by FTD.

We’re already looking forward to next year’s conference in Raleigh, NC ❤️

05/01/2026

Day one at the AFTD 2026 Education Conference brought connection, creativity, and powerful conversations about research, care, and community.

We’re grateful to everyone joining us in person and virtually, and we look forward to day two. ❤️

04/29/2026

Steve Edwards spent more than 30 years serving as a firefighter, including responding in the aftermath of 9/11.

Years later, Steve began to notice changes that couldn’t be ignored. He was eventually diagnosed with frontotemporal degeneration (FTD).

The HEALTHY BRAINS Act would support critical research into environmental risk factors for diseases like FTD.

🔗 Take action today and ask your representative to co-sponsor the HEALTHY BRAINS Act: https://bit.ly/3P5inWP