Penn FTD Center
@pennftdc.bsky.social
The University of Pennsylvania Frontotemporal Degeneration Center
linktr.ee/pennftdcenter
linktr.ee/pennftdcenter
Happy Genetic Counselor Appreciation Day!🧬 Today we celebrate Penn FTD Center Genetic Counselor, Laynie Dratch!
Discover more about the role of Genetic Counselors and if genetic counseling may be right for you at the link in our bio!
#geneticcounselorappreciationday
Discover more about the role of Genetic Counselors and if genetic counseling may be right for you at the link in our bio!
#geneticcounselorappreciationday
November 13, 2025 at 3:29 PM
Happy Genetic Counselor Appreciation Day!🧬 Today we celebrate Penn FTD Center Genetic Counselor, Laynie Dratch!
Discover more about the role of Genetic Counselors and if genetic counseling may be right for you at the link in our bio!
#geneticcounselorappreciationday
Discover more about the role of Genetic Counselors and if genetic counseling may be right for you at the link in our bio!
#geneticcounselorappreciationday
Penn FTD Center Staff Highlight 🌟
Cara Joyce, MPH is a Regulatory Project Manager at the Penn FTD Center for over 2 years.
📍Read more details on Cara in the blog post! Link in our bio!
Cara Joyce, MPH is a Regulatory Project Manager at the Penn FTD Center for over 2 years.
📍Read more details on Cara in the blog post! Link in our bio!
November 12, 2025 at 1:33 PM
Penn FTD Center Staff Highlight 🌟
Cara Joyce, MPH is a Regulatory Project Manager at the Penn FTD Center for over 2 years.
📍Read more details on Cara in the blog post! Link in our bio!
Cara Joyce, MPH is a Regulatory Project Manager at the Penn FTD Center for over 2 years.
📍Read more details on Cara in the blog post! Link in our bio!
The Penn FTD Center is thrilled to announce that we will be hosting our sixth annual virtual familial conference, Uncovering the Genetics of Familial FTD/ALS, on Wednesday, February 25, 2026, from 1:00PM-4:00PM EST.
Stay tuned for the registration link and additional details!
Stay tuned for the registration link and additional details!
November 11, 2025 at 4:21 PM
The Penn FTD Center is thrilled to announce that we will be hosting our sixth annual virtual familial conference, Uncovering the Genetics of Familial FTD/ALS, on Wednesday, February 25, 2026, from 1:00PM-4:00PM EST.
Stay tuned for the registration link and additional details!
Stay tuned for the registration link and additional details!
Attending the GSA Annual Scientific Meeting this week? Co-Director Lauren Massimo is collaborating with other experts to discuss how to adapt interventions to meet the needs of FTD caregivers.
🗓️ Nov 12th
⏲️ 8:00-9:30AM
📍 Hynes - Room 104
Be sure to check out this symposium!
🗓️ Nov 12th
⏲️ 8:00-9:30AM
📍 Hynes - Room 104
Be sure to check out this symposium!
November 10, 2025 at 6:34 PM
Attending the GSA Annual Scientific Meeting this week? Co-Director Lauren Massimo is collaborating with other experts to discuss how to adapt interventions to meet the needs of FTD caregivers.
🗓️ Nov 12th
⏲️ 8:00-9:30AM
📍 Hynes - Room 104
Be sure to check out this symposium!
🗓️ Nov 12th
⏲️ 8:00-9:30AM
📍 Hynes - Room 104
Be sure to check out this symposium!
Thank you to all the attendees of the 2025 Penn FTD Center Caregiver Conference! We are grateful for the opportunity to provide information and resources to our community.
Stay tuned for more information about the 2026 Penn FTD Center Familial Conference in the coming weeks!
Stay tuned for more information about the 2026 Penn FTD Center Familial Conference in the coming weeks!
November 7, 2025 at 3:22 PM
Thank you to all the attendees of the 2025 Penn FTD Center Caregiver Conference! We are grateful for the opportunity to provide information and resources to our community.
Stay tuned for more information about the 2026 Penn FTD Center Familial Conference in the coming weeks!
Stay tuned for more information about the 2026 Penn FTD Center Familial Conference in the coming weeks!
We understand that care management can be tough. This November Care Management Monday, we are sharing tips on managing habits related to hiding, hoarding, and losing things.
📍Check out our website for more information on Support & Resources
📍Check out our website for more information on Support & Resources
November 3, 2025 at 10:51 AM
We understand that care management can be tough. This November Care Management Monday, we are sharing tips on managing habits related to hiding, hoarding, and losing things.
📍Check out our website for more information on Support & Resources
📍Check out our website for more information on Support & Resources
The Penn FTD Center is here for another FTD Fact Friday! And we are here to help!
📍 Check out our Support & Resources
📃 Read our monthly blog
🔎 Learn more about Observational Research or Clinical Trials
Click the website link for more!
📍 Check out our Support & Resources
📃 Read our monthly blog
🔎 Learn more about Observational Research or Clinical Trials
Click the website link for more!
October 31, 2025 at 4:31 PM
The Penn FTD Center is here for another FTD Fact Friday! And we are here to help!
📍 Check out our Support & Resources
📃 Read our monthly blog
🔎 Learn more about Observational Research or Clinical Trials
Click the website link for more!
📍 Check out our Support & Resources
📃 Read our monthly blog
🔎 Learn more about Observational Research or Clinical Trials
Click the website link for more!
Penn FTD Center Staff Highlight 🌟
Dahlia Kamel, MS is the Penn FTD Center Clinical Research Program and Operations Lead and Assistant Director who has worked at Penn for over 6 years.
📍Read more details on Dahlia in the blog post! Link in our bio!
Dahlia Kamel, MS is the Penn FTD Center Clinical Research Program and Operations Lead and Assistant Director who has worked at Penn for over 6 years.
📍Read more details on Dahlia in the blog post! Link in our bio!
October 29, 2025 at 2:26 PM
Penn FTD Center Staff Highlight 🌟
Dahlia Kamel, MS is the Penn FTD Center Clinical Research Program and Operations Lead and Assistant Director who has worked at Penn for over 6 years.
📍Read more details on Dahlia in the blog post! Link in our bio!
Dahlia Kamel, MS is the Penn FTD Center Clinical Research Program and Operations Lead and Assistant Director who has worked at Penn for over 6 years.
📍Read more details on Dahlia in the blog post! Link in our bio!
The Penn FTD Center is here for another FTD Fact Friday! And we are here to help!
📍 Check out our Support & Resources
📃 Read our monthly blog
🔎 Learn more about Observational Research or Clinical Trials
Click the website link for more!
📍 Check out our Support & Resources
📃 Read our monthly blog
🔎 Learn more about Observational Research or Clinical Trials
Click the website link for more!
October 24, 2025 at 2:23 PM
The Penn FTD Center is here for another FTD Fact Friday! And we are here to help!
📍 Check out our Support & Resources
📃 Read our monthly blog
🔎 Learn more about Observational Research or Clinical Trials
Click the website link for more!
📍 Check out our Support & Resources
📃 Read our monthly blog
🔎 Learn more about Observational Research or Clinical Trials
Click the website link for more!
💡In Penn FTD Center’s October Research Roundup, Postdoctoral Fellow Barbara Spencer, PhD, examines how C9orf72 expansions impact the risk for developing subsequent symptoms in ALS and FTD.
Read now at the link in our bio or by visiting our website!
Read now at the link in our bio or by visiting our website!
October 23, 2025 at 2:05 PM
💡In Penn FTD Center’s October Research Roundup, Postdoctoral Fellow Barbara Spencer, PhD, examines how C9orf72 expansions impact the risk for developing subsequent symptoms in ALS and FTD.
Read now at the link in our bio or by visiting our website!
Read now at the link in our bio or by visiting our website!
The Penn FTD Center is here for another FTD Fact Friday! And we are here to help!
📍 Check out our Support & Resources
📃 Read our monthly blog
🔎 Learn more about Observational Research or Clinical Trials
Click the website link for more!
📍 Check out our Support & Resources
📃 Read our monthly blog
🔎 Learn more about Observational Research or Clinical Trials
Click the website link for more!
October 17, 2025 at 2:44 PM
The Penn FTD Center is here for another FTD Fact Friday! And we are here to help!
📍 Check out our Support & Resources
📃 Read our monthly blog
🔎 Learn more about Observational Research or Clinical Trials
Click the website link for more!
📍 Check out our Support & Resources
📃 Read our monthly blog
🔎 Learn more about Observational Research or Clinical Trials
Click the website link for more!
Register now for the 2025 Penn FTD Center’s Annual Caregiver Conference!
📆 Monday, November 3, 2025
⏱ 8am-4:30pm
📍Smilow Center for Translational Research
Click the link in our bio for the link to register for the conference!
We hope to see you in November!
📆 Monday, November 3, 2025
⏱ 8am-4:30pm
📍Smilow Center for Translational Research
Click the link in our bio for the link to register for the conference!
We hope to see you in November!
October 16, 2025 at 2:38 PM
Register now for the 2025 Penn FTD Center’s Annual Caregiver Conference!
📆 Monday, November 3, 2025
⏱ 8am-4:30pm
📍Smilow Center for Translational Research
Click the link in our bio for the link to register for the conference!
We hope to see you in November!
📆 Monday, November 3, 2025
⏱ 8am-4:30pm
📍Smilow Center for Translational Research
Click the link in our bio for the link to register for the conference!
We hope to see you in November!
FTD CRLI Ambassador Julia spoke with the LA Times to detail the changes she experienced with her husband, Marc before, during, and after his diagnosis of FTD.
Thank you, Julia, for sharing your story!
www.yahoo.com/news/article...
Thank you, Julia, for sharing your story!
www.yahoo.com/news/article...
'I lost me': How frontotemporal dementia changed a mind and a marriage
A Westlake Village man living with frontotemporal dementia has something few people with the condition do: the ability to describe his disease.
www.yahoo.com
October 15, 2025 at 2:14 PM
FTD CRLI Ambassador Julia spoke with the LA Times to detail the changes she experienced with her husband, Marc before, during, and after his diagnosis of FTD.
Thank you, Julia, for sharing your story!
www.yahoo.com/news/article...
Thank you, Julia, for sharing your story!
www.yahoo.com/news/article...
📰 Are you subscribed to the Penn FTD Center newsletter?
Use the link in our bio to stay up to date on our latest updates, educational events, and research advancements!
Use the link in our bio to stay up to date on our latest updates, educational events, and research advancements!
October 14, 2025 at 1:14 PM
📰 Are you subscribed to the Penn FTD Center newsletter?
Use the link in our bio to stay up to date on our latest updates, educational events, and research advancements!
Use the link in our bio to stay up to date on our latest updates, educational events, and research advancements!
The Alzheimer's Disease-Related Dementias (ADRD) Summit informs priorities at the NIH. A report has been established based on the virtual meetings in April and June of 2025.
The report, along with videos from the conference, can be reviewed by clicking on the link in our bio 📑
The report, along with videos from the conference, can be reviewed by clicking on the link in our bio 📑
October 13, 2025 at 2:27 PM
The Alzheimer's Disease-Related Dementias (ADRD) Summit informs priorities at the NIH. A report has been established based on the virtual meetings in April and June of 2025.
The report, along with videos from the conference, can be reviewed by clicking on the link in our bio 📑
The report, along with videos from the conference, can be reviewed by clicking on the link in our bio 📑
The Penn FTD Center is here for another FTD Fact Friday! And we are here to help!
📍 Check out our Support & Resources
📃 Read our monthly blog
🔎 Learn more about Observational Research or Clinical Trials
Click the website link for more!
📍 Check out our Support & Resources
📃 Read our monthly blog
🔎 Learn more about Observational Research or Clinical Trials
Click the website link for more!
October 10, 2025 at 1:00 PM
The Penn FTD Center is here for another FTD Fact Friday! And we are here to help!
📍 Check out our Support & Resources
📃 Read our monthly blog
🔎 Learn more about Observational Research or Clinical Trials
Click the website link for more!
📍 Check out our Support & Resources
📃 Read our monthly blog
🔎 Learn more about Observational Research or Clinical Trials
Click the website link for more!
The Penn FTD Center spoke with the Caregiver Conference keynote speaker Linde Jacobs for a highlight to her background, Cure MAPT FTD, and her advocacy journey. Read the October blog post now at the link in our bio!
Register now for the Penn FTD Center Caregiver Conference!
Register now for the Penn FTD Center Caregiver Conference!
October 9, 2025 at 3:11 PM
The Penn FTD Center spoke with the Caregiver Conference keynote speaker Linde Jacobs for a highlight to her background, Cure MAPT FTD, and her advocacy journey. Read the October blog post now at the link in our bio!
Register now for the Penn FTD Center Caregiver Conference!
Register now for the Penn FTD Center Caregiver Conference!
We understand that care management can be tough. This October Care Management Monday, we are sharing tips on managing compulsive behaviors.
📍Check out our website for more information on Support & Resources
📍Check out our website for more information on Support & Resources
October 6, 2025 at 1:57 PM
We understand that care management can be tough. This October Care Management Monday, we are sharing tips on managing compulsive behaviors.
📍Check out our website for more information on Support & Resources
📍Check out our website for more information on Support & Resources
The Penn FTD Center is here for another FTD Fact Friday! And we are here to help!
📍 Check out our Support & Resources
📃 Read our monthly blog
🔎 Learn more about Observational Research or Clinical Trials
Click the website link for more!
📍 Check out our Support & Resources
📃 Read our monthly blog
🔎 Learn more about Observational Research or Clinical Trials
Click the website link for more!
October 3, 2025 at 3:23 PM
The Penn FTD Center is here for another FTD Fact Friday! And we are here to help!
📍 Check out our Support & Resources
📃 Read our monthly blog
🔎 Learn more about Observational Research or Clinical Trials
Click the website link for more!
📍 Check out our Support & Resources
📃 Read our monthly blog
🔎 Learn more about Observational Research or Clinical Trials
Click the website link for more!
PhD candidate at the UPenn’s School of Nursing Lauren Fisher has been awarded a grant to support her dissertation study examining how empathy loss in bvFTD influences caregiver stress by contextualizing quantitative results in the lived experiences of caregivers.
Congrats Lauren! 🎉
Congrats Lauren! 🎉
October 2, 2025 at 7:00 PM
PhD candidate at the UPenn’s School of Nursing Lauren Fisher has been awarded a grant to support her dissertation study examining how empathy loss in bvFTD influences caregiver stress by contextualizing quantitative results in the lived experiences of caregivers.
Congrats Lauren! 🎉
Congrats Lauren! 🎉
Penn FTD Center Staff Highlight 🌟
Quinn Hlava, MRA is a Senior Clinical Research Coordinator who works on observational research, specifically the ALLFTD study and various imaging studies.
📍Read more details on Quinn in the blog post! Link in our bio!
Quinn Hlava, MRA is a Senior Clinical Research Coordinator who works on observational research, specifically the ALLFTD study and various imaging studies.
📍Read more details on Quinn in the blog post! Link in our bio!
September 29, 2025 at 3:21 PM
Penn FTD Center Staff Highlight 🌟
Quinn Hlava, MRA is a Senior Clinical Research Coordinator who works on observational research, specifically the ALLFTD study and various imaging studies.
📍Read more details on Quinn in the blog post! Link in our bio!
Quinn Hlava, MRA is a Senior Clinical Research Coordinator who works on observational research, specifically the ALLFTD study and various imaging studies.
📍Read more details on Quinn in the blog post! Link in our bio!
In honor of FTD Awareness Week 2025, the Penn FTD Center staff has put together a series of videos to share tips and information!
Assistant Director Lyles Clark provides an overview of research at the Penn FTD Center.
Click on the link in our bio to watch now! #endFTD
Assistant Director Lyles Clark provides an overview of research at the Penn FTD Center.
Click on the link in our bio to watch now! #endFTD
September 26, 2025 at 5:07 PM
In honor of FTD Awareness Week 2025, the Penn FTD Center staff has put together a series of videos to share tips and information!
Assistant Director Lyles Clark provides an overview of research at the Penn FTD Center.
Click on the link in our bio to watch now! #endFTD
Assistant Director Lyles Clark provides an overview of research at the Penn FTD Center.
Click on the link in our bio to watch now! #endFTD
In honor of FTD Awareness Week 2025, the Penn FTD Center staff has put together a series of videos to share tips and information!
This afternoon, Clinical Research Project Manager Emily Xie provides an introduction into observational research.
Click on the link in our bio to watch now! #endFTD
This afternoon, Clinical Research Project Manager Emily Xie provides an introduction into observational research.
Click on the link in our bio to watch now! #endFTD
September 25, 2025 at 6:53 PM
In honor of FTD Awareness Week 2025, the Penn FTD Center staff has put together a series of videos to share tips and information!
This afternoon, Clinical Research Project Manager Emily Xie provides an introduction into observational research.
Click on the link in our bio to watch now! #endFTD
This afternoon, Clinical Research Project Manager Emily Xie provides an introduction into observational research.
Click on the link in our bio to watch now! #endFTD
In honor of FTD Awareness Week 2025, the Penn FTD Center staff has put together a series of videos to share tips and information!
This morning, Clinical Research Coordinators Riya & Alex provide an overview on clinical trials.
Click on the link in our bio to watch now! #endFTD
This morning, Clinical Research Coordinators Riya & Alex provide an overview on clinical trials.
Click on the link in our bio to watch now! #endFTD
September 25, 2025 at 1:18 PM
In honor of FTD Awareness Week 2025, the Penn FTD Center staff has put together a series of videos to share tips and information!
This morning, Clinical Research Coordinators Riya & Alex provide an overview on clinical trials.
Click on the link in our bio to watch now! #endFTD
This morning, Clinical Research Coordinators Riya & Alex provide an overview on clinical trials.
Click on the link in our bio to watch now! #endFTD
In honor of FTD Awareness Week 2025, the Penn FTD Center staff has put together a series of videos to share tips and information!
Genetic Counselor Laynie Dratch provides details on genetics in FTD.
Click on the link in our bio to watch now! #endFTD
Genetic Counselor Laynie Dratch provides details on genetics in FTD.
Click on the link in our bio to watch now! #endFTD
September 24, 2025 at 1:47 PM
In honor of FTD Awareness Week 2025, the Penn FTD Center staff has put together a series of videos to share tips and information!
Genetic Counselor Laynie Dratch provides details on genetics in FTD.
Click on the link in our bio to watch now! #endFTD
Genetic Counselor Laynie Dratch provides details on genetics in FTD.
Click on the link in our bio to watch now! #endFTD