FTD Disorders Registry
@ftdregistry.bsky.social
The FTD Disorders Registry is a powerful tool in the movement to create therapies and find a cure for frontotemporal degeneration. Numbers have power. Join the Registry. Advance the science. #EndFTD www.ftdregistry.org
One drop can tell a story. Discover how biosamples are powering FTD research and how you can help: ftdregistry.org/press/what-w...
#endFTD
#endFTD
November 18, 2025 at 4:34 PM
One drop can tell a story. Discover how biosamples are powering FTD research and how you can help: ftdregistry.org/press/what-w...
#endFTD
#endFTD
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...
ftdregistry.org/quick-questi...
November 17, 2025 at 3:00 PM
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...
ftdregistry.org/quick-questi...
Carrie Milliard, MS, CGC, CCRC and Esther Kane, MSN, RN-CDP are back representing the FTD Disorders Registry and @theaftd.bsky.social at #GSA2025. Come visit us at Booth #201.
November 14, 2025 at 3:21 PM
Carrie Milliard, MS, CGC, CCRC and Esther Kane, MSN, RN-CDP are back representing the FTD Disorders Registry and @theaftd.bsky.social at #GSA2025. Come visit us at Booth #201.
The FTD Disorders Registry and @theaftd.bsky.social are presenting data on the FTD diagnostic experience and impact on families at the @geronsociety.bsky.social Annual Scientific Meeting this week. If you are attending, please come visit us at Booth #201. #GSA2025
November 13, 2025 at 7:36 PM
The FTD Disorders Registry and @theaftd.bsky.social are presenting data on the FTD diagnostic experience and impact on families at the @geronsociety.bsky.social Annual Scientific Meeting this week. If you are attending, please come visit us at Booth #201. #GSA2025
Rev. Jesse Jackson’s hospitalization has brought attention to #PSP, an FTD subtype that affects movement, balance, and eye control. Early symptoms often mimic Parkinson’s.
Learn more: www.theaftd.org/what-is-ftd/...
PSP research opportunities: ftdregistry.org/find-a-study/
Learn more: www.theaftd.org/what-is-ftd/...
PSP research opportunities: ftdregistry.org/find-a-study/
November 13, 2025 at 1:24 PM
Rev. Jesse Jackson’s hospitalization has brought attention to #PSP, an FTD subtype that affects movement, balance, and eye control. Early symptoms often mimic Parkinson’s.
Learn more: www.theaftd.org/what-is-ftd/...
PSP research opportunities: ftdregistry.org/find-a-study/
Learn more: www.theaftd.org/what-is-ftd/...
PSP research opportunities: ftdregistry.org/find-a-study/
Today we honor the genetic counselors who guide families through FTD genetics with clarity and compassion. Their work directly supports the mission of the FTD Disorders Registry to build a strong, informed, research-ready community.
November 13, 2025 at 1:08 PM
Today we honor the genetic counselors who guide families through FTD genetics with clarity and compassion. Their work directly supports the mission of the FTD Disorders Registry to build a strong, informed, research-ready community.
As we honor Veterans today, we also recognize ongoing efforts to better understand and support Veterans impacted by FTD. Research continues to expand, and your participation and experiences guide that progress.
November 11, 2025 at 12:40 PM
As we honor Veterans today, we also recognize ongoing efforts to better understand and support Veterans impacted by FTD. Research continues to expand, and your participation and experiences guide that progress.
What are Registry participants most interested in?
Each number represents someone looking for answers and contributing to discovery.
Learn more: ftdregistry.org/press/what-t...
#endFTD
Each number represents someone looking for answers and contributing to discovery.
Learn more: ftdregistry.org/press/what-t...
#endFTD
October 23, 2025 at 1:59 PM
What are Registry participants most interested in?
Each number represents someone looking for answers and contributing to discovery.
Learn more: ftdregistry.org/press/what-t...
#endFTD
Each number represents someone looking for answers and contributing to discovery.
Learn more: ftdregistry.org/press/what-t...
#endFTD
The 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
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
October 16, 2025 at 12:57 PM
The 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
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
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
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
October 10, 2025 at 12:03 PM
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
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
#NEALS #NEALS2025 #NEALSMtg
October 9, 2025 at 4:49 PM
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
#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
In our FTD Insights Survey, people shared a wide variety of hopes from easing daily challenges to improving overall quality of life.
#endFTD
October 3, 2025 at 11:31 AM
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
In our FTD Insights Survey, people shared a wide variety of hopes from easing daily challenges to improving overall quality of life.
#endFTD
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
#endFTD #WorldFTDAwarenessWeek #FTD #Genetics
September 27, 2025 at 2:46 PM
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
#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
Learn more: ftdregistry.org/press/how-ca...
#WorldFTDAwarenessWeek #endFTD #FTDResearch #FTDAwareness
September 26, 2025 at 12:53 PM
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
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
Share your experience in this month’s Quick Question: ftdregistry.org/quick-questi...
#WorldFTDAwarenessWeek #EndFTD
September 26, 2025 at 12:07 PM
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
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.
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.
September 25, 2025 at 3:49 PM
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.
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
#endFTD #FTDAwareness #WorldFTDAwarenessWeek #FTDResearch
September 24, 2025 at 12:24 PM
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
#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
Registry data show three of the most distressing symptoms are impaired judgment, personality changes, and mood changes. www.ftdregistry.org
#WorldFTDAwarenessWeek #EndFTD #FTDAwareness #FTDResearch
September 23, 2025 at 11:36 AM
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
Registry data show three of the most distressing symptoms are impaired judgment, personality changes, and mood changes. www.ftdregistry.org
#WorldFTDAwarenessWeek #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
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
September 22, 2025 at 2:10 PM
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
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
September 21, 2025 at 12:24 PM
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
September 16, 2025 at 4:11 PM
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
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
September 15, 2025 at 6:43 PM
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
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
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
September 11, 2025 at 12:08 PM
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
September 10, 2025 at 5:13 PM
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
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...
ftdregistry.org/press/the-im...
August 27, 2025 at 12:33 PM
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...
ftdregistry.org/press/the-im...