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
2025 was a year of momentum for the FTD Disorders Registry, with a 97% increase in new accounts. Learn more about the year’s growth and impact: ftdregistry.org/press/a-year...
#endFTD #FTDresearch
#endFTD #FTDresearch
January 2, 2026 at 2:35 PM
2025 was a year of momentum for the FTD Disorders Registry, with a 97% increase in new accounts. Learn more about the year’s growth and impact: ftdregistry.org/press/a-year...
#endFTD #FTDresearch
#endFTD #FTDresearch
This Christmas, we’re thinking of everyone in the FTD community. Thank you for supporting the FTD Disorders Registry and helping advance research. Wishing peace and comfort to all who celebrate.
December 24, 2025 at 12:48 PM
This Christmas, we’re thinking of everyone in the FTD community. Thank you for supporting the FTD Disorders Registry and helping advance research. Wishing peace and comfort to all who celebrate.
The FTD Disorders Registry was recently featured at #CTAD2025 in San Diego! Dr. Shana Dodge presented a poster showing how the Registry is helping accelerate clinical trial recruitment.
Read more: ftdregistry.org/press/ftd-di...
Read more: ftdregistry.org/press/ftd-di...
December 19, 2025 at 4:01 PM
The FTD Disorders Registry was recently featured at #CTAD2025 in San Diego! Dr. Shana Dodge presented a poster showing how the Registry is helping accelerate clinical trial recruitment.
Read more: ftdregistry.org/press/ftd-di...
Read more: ftdregistry.org/press/ftd-di...
Each month, the FTD Disorders Registry invites our community to answer one quick question. Add your voice today and see how others responded to last month’s question: ftdregistry.org/quick-questi...
December 16, 2025 at 5:52 PM
Each month, the FTD Disorders Registry invites our community to answer one quick question. Add your voice today and see how others responded to last month’s question: ftdregistry.org/quick-questi...
Wishing a warm and meaningful Hanukkah to those who celebrate. May the Festival of Lights bring light and hope. We are grateful for our Registry community. Chag Sameach!
December 15, 2025 at 4:45 PM
Wishing a warm and meaningful Hanukkah to those who celebrate. May the Festival of Lights bring light and hope. We are grateful for our Registry community. Chag Sameach!
On #GivingTuesday, we’re grateful to @theaftd.bsky.social & The Bluefield Project, whose support makes the Registry possible.
Please consider supporting these organizations driving progress to #endFTD.
AFTD: www.theaftd.org/get-involved...
Bluefield Project: www.bluefieldproject.org/donate/
Please consider supporting these organizations driving progress to #endFTD.
AFTD: www.theaftd.org/get-involved...
Bluefield Project: www.bluefieldproject.org/donate/
December 2, 2025 at 4:22 PM
On #GivingTuesday, we’re grateful to @theaftd.bsky.social & The Bluefield Project, whose support makes the Registry possible.
Please consider supporting these organizations driving progress to #endFTD.
AFTD: www.theaftd.org/get-involved...
Bluefield Project: www.bluefieldproject.org/donate/
Please consider supporting these organizations driving progress to #endFTD.
AFTD: www.theaftd.org/get-involved...
Bluefield Project: www.bluefieldproject.org/donate/
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