FTD Disorders Registry

Webinar announcement from AFTD, titled 'Talking to Family About Genetic FTD Risk' set for October 20, 2025, at 3:00 p.m. ET. Features speakers Angela Lunde, Ansel Dow, and Wanda Smith. Image displays a family seated around a dining table in a well-lit room, engaged in conversation.

How do you talk to family about the genetic risks of FTD?

On 10/20 at 3 pm, AFTD will host a webinar featuring community members Wanda Smith and Ansel Dow, who will share their experiences. Angela Lunde, from Mayo Clinic, will provide practical tools and strategies. Sign up: https://bit.ly/46TyMUh

Living with FTD or caring for someone who does can bring emotional challenges that often go unseen.

This #WorldMentalHealthDay, remember: your well-being matters. You are not alone.

Find support through @theaftd.bsky.social: theaftd.org

Learn more at ftdregistry.org

#EndFTD

FTD Disorders Registry Director Carrie Milliard and @theaftd.bsky.social's Amanda Gleixner joined the NEALS Consortium Annual Meeting, raising awareness of FTD and connecting with the ALS community to advance research, collaboration, and hope.

#NEALS #NEALS2025 #NEALSMtg

What would make a treatment for FTD truly effective?

In our FTD Insights Survey, people shared a wide variety of hopes from easing daily challenges to improving overall quality of life.

#endFTD

The Road Ahead: How Registry Data Can Drive Breakthroughs - FTD Disorders Registry Progress is possible. See how Registry data can unlock breakthroughs in FTD research just as new treatments are showing progress in other neurological disorders.

Registry data helps researchers spot patterns, shape better studies, and move us closer to treatments for FTD. Every participant makes a difference.

Read more: ftdregistry.org/press/the-ro...

#FTD #EndFTD #FTDResearch

FTD is genetic in about 20% of cases. Yet only 23.3% of people diagnosed and 12.4% of relatives have had genetic testing. Learn why this matters: ftdregistry.org/press/what-r...

#endFTD #WorldFTDAwarenessWeek #FTD #Genetics

During World FTD Awareness Week, we recognize the challenges care partners face. The daily demands of FTD can make research participation difficult, yet their voices are essential to progress.

Learn more: ftdregistry.org/press/how-ca...

#WorldFTDAwarenessWeek #endFTD #FTDResearch #FTDAwareness

FTD impacts more than health. It strains finances. Care partners say the top job effects are retiring early, cutting hours permanently, or cutting them temporarily.

Share your experience in this month’s Quick Question: ftdregistry.org/quick-questi...

#WorldFTDAwarenessWeek #EndFTD

FTD impacts care partners too with stress, lost income & financial strain.

At #AAIC25, the FTD Disorders Registry showed how misdiagnosis & delays deepen that burden: ftdregistry.org/press/regist...

This #WorldFTDAwarenessWeek, let’s honor care partners & push for faster diagnoses.

FTD can steal your words, your connection, your voice. Join the FTD Disorders Registry to help researchers find treatments and a cure. www.FTDRegistry.org

#endFTD #FTDAwareness #WorldFTDAwarenessWeek #FTDResearch

FTD disorders can make someone seem like a stranger to their loved ones.

Registry data show three of the most distressing symptoms are impaired judgment, personality changes, and mood changes. www.ftdregistry.org

#WorldFTDAwarenessWeek #EndFTD #FTDAwareness #FTDResearch

From Surveys to Science: How Registry Data Becomes Research - FTD Disorders Registry Every survey response in the Registry Research Study helps turn lived experience into research data that drives discovery.

World FTD Awareness Week starts with action!

See how survey responses from the Registry Research Study become powerful data that drives FTD disorders research.

Read more: ftdregistry.org/press/from-s...

#endFTD #FTDAwareness #FTDResearch

Memory isn’t usually the first thing to change in FTD.

Registry data shows the most common early symptoms are:
• Language challenges
• Cognitive changes
• Mood changes

Raising awareness helps speed diagnosis & research.
www.FTDregistry.org

#EndFTD #FTDAwareness #FTDResearch

World FTD Awareness Week begins today! FTD often starts between ages 45–65, making it the most common dementia under 60. Let’s raise awareness and drive research toward treatments and a cure. #EndFTD #FTDAwareness #USA

The @theaftd.bsky.social Research Roundtable is underway! Dr. Michelle Campbell (FDA) led a session on defining meaningful change, featuring FTD Registry data from Carrie Milliard, MS, CGC, and insights from advocates Julia P. & Dr. Joseph M. #endFTD

New Quick Question is live!

Each month, the FTD Disorders Registry asks one simple question to learn more from our community. Share your answer today, and see how others responded to last month’s question.

ftdregistry.org/quick-questi...

#endFTD

Promotional image for an AFTD HelpLine webinar titled 'The Lived Experience with FTD: The Road to an FTD Diagnosis' scheduled for September 25, 2025, featuring two individuals having a conversation in a modern office setting. The event is sponsored by AviadoBio.

Finding answers to an FTD diagnosis is often a long and difficult road. In our upcoming webinar, The Lived Experience with FTD: The Road to an Diagnosis, you'll hear 3 powerful stories that shed light on this journey.

📅 9/25 at 12 pm
💻 Register here: https://bit.ly/3JLiqUL

Sponsored by AviadoBio

Registry Director Carrie Milliard joined real-life superheroes at the Rainwater Charitable Foundation’s Tau Consortium Investigators’ Meeting: scientists, clinicians & advocates pushing toward breakthroughs in tauopathies. Together, we’re stronger. 💜 #endFTD

FTD Disorders Registry Director Carrie Milliard, MS, CGC, CCRC and Nicole Bjorklund, PhD, Director of Research and Grants for @theaftd.bsky.social shared how we are supporting FTD research initiatives at Rainwater Charitable Foundation's 2025 Tau Consortium Investigators Meeting this week. #endFTD

Get Ready for World FTD Awareness Week - FTD Disorders Registry World FTD Awareness Week is September 21-27, 2025.

World FTD Awareness Week is coming Sept 21–27, 2025.
This year we ask: “What If It’s FTD?”

Update your profile, use the toolkit, and share your story to raise #FTDawareness.

Learn more: ftdregistry.org/press/get-re...

#EndFTD

ORION Trial Ends, Reinforcing the Need for Continued FTD Research - FTD Disorders Registry Research is our roadmap to breakthroughs, and sometimes setbacks are the fuel that drive us forward.

Amylyx’s ORION trial in PSP has ended after not meeting its goals. While the news is disappointing, every study adds knowledge that guides future research.

Read more: ftdregistry.org/press/orion-...

#endFTD #FTDresearch

Registry Data Featured at AAIC 2025 - FTD Disorders Registry The FTD Disorders Registry showcased new insights at AAIC 2025.

FTD Disorders Registry data was featured in several posters at the Alzheimer’s Association International Conference this year in Toronto.

Learn more and view the posters: ftdregistry.org/press/regist...

#AAIC2025 #endFTD

Emma Heming Willis interviewed by Diane Sawyer in a Prime Time Special, with both sitting in a room, as shown in an ABC News segment.

Emma Heming Willis was interviewed Tuesday night on “Emma and Bruce Willis: The Unexpected Journey – A Diane Sawyer Special,” sharing her family’s experience of living with FTD.

🔴 Learn more: https://bit.ly/47Ny0sS

Research is the key to #EndFTD. Bruce Willis’s diagnosis raised awareness about FTD disorders impacting thousands of families every day. Progress will come through research. Together, we can find answers.

ftdregistry.org/press/the-im...

Anyone with an interest in FTD disorders research can join the Registry! Sign up here: www.ftdregistry.org

Thank you to everyone who answered questions about sleep challenges in last month's Quick Question. This month, we are asking about the types of health insurance coverage. To answer and see last month’s results, visit here: ftdregistry.org/quick-questi...

#FTDQuickQuestion #EndFTD

Thank you, #AAIC2025! We loved connecting with researchers, clinicians & advocates at our booth. Your curiosity and commitment to advancing #FTD understanding inspire us. Let’s keep moving toward earlier diagnosis and better care. #FTDRegistry #FTDResearch #EndFTD

Join us for a free webinar on Wednesday, August 13, 2025 to explore the diagnostic journey for frontotemporal degeneration (FTD) and how we can improve detection and referral. Free CME and CEC credits available!

Register here: events.zoom.us/ev/AlPqObBF8...

#endFTD #neurology

Great connecting with the team from Cure MAPT FTD today! #AAIC2025

Join Registry Director Carrie Milliard today at #AAIC2025 from 3:30–4:15 PM at Poster #480.

She will share our work on the challenges families experience during the diagnostic journey for behavioral variant frontotemporal dementia (bvFTD) using data from the Registry.

#EndFTD