Penn FTD Center
@pennftdc.bsky.social
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The University of Pennsylvania Frontotemporal Degeneration Center linktr.ee/pennftdcenter
Recap the highlights of 2025 with the Penn FTD Center! ๐ We are wishing you and your loved ones a wonderful holiday season and can't wait to see what 2026 brings!
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12 days ago
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๐ฐ 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!
16 days ago
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Penn FTD Center Staff Highlight ๐ Emily Xie is the Penn FTD Center Clinical Research Project Manager. Emilyโs focus lies in coordinating research operations to support both participants and research team. ๐Read more details on Emily in the blog post at the link in our bio!
21 days ago
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In our December blog, Penn FTD Center Clinical Research Program and Operations Lead and Assistant Director Dahlia Kamel, MS provides some helpful tips for navigating the holiday season when a loved one is living with FTD. Our latest blog post can be found at the link in our bio!
22 days ago
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FTD Fact Friday: FTD that runs in a family is often related to variants (permanent changes) in certain genes. The Penn FTD Center is here to help! ๐ Check out our Support & Resources ๐ฐ Read our monthly blog ๐ Learn more about Observational Research or Clinical Trials Click the website link for more!
26 days ago
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๐ขLooking for the latest news from the Penn FTD Center? Want to stay up-to-date on research and trials? Make sure you are following the Penn FTD Center on all your social platforms. ๐All of our social media accounts can be found at the link in our bio!
27 days ago
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We understand that care management can be tough. This December Care Management Monday, we are sharing tips on managing the holidays. ๐Check out our website for more information on Support & Resources
30 days ago
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The Penn FTD Center is here for another FTD Fact Friday! And we are here to help! ๐ Check out our Support & Resources ๐ Read our monthly blog ๐ Learn more about Observational Research or Clinical Trials Click the website link for more!
about 1 month ago
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Penn FTD Center's Emma Rhodes worked alongside collaborators to publish a paper in The American Journal of Geriatric Psychiatry regarding accelerated cognitive decline in late life depression. Read the paper using the link below ๐
www.sciencedirect.com/science/arti...
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Accelerated Cognitive Decline in Late Life Depression: The Role of Amyloid-ฮฒ, Cortico-Limbic Volume, and White Matter Hyperintensities
Late life depression (LLD) is associated with cognitive impairment and dementia, but studies of cognitive decline in LLD have been confounded by underโฆ
https://www.sciencedirect.com/science/article/pii/S1064748125004531
about 1 month ago
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Laynie Dratch, ScM, CGC, Penn FTD Center Genetic Counselor, presented two posters at the National Society of Genetic Counselors (NSGC) Annual Conference in Seattle, WA. Thank you for sharing your research, Laynie!
about 1 month ago
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Penn FTD Center researchers recently published an article featured in Alzheimerโs & Dementia: Behavior & Socioeconomics of Aging on neighborhood deprivation in bvFTD. Read the article below๐
alz-journals.onlinelibrary.wiley.com/doi/10.1002/...
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Higher neighborhood deprivation is associated with accelerated disease progression in behavioralโvariant frontotemporal degeneration
INTRODUCTION Neighborhood deprivation is associated with shorter survival, cognitive impairment, and neurodegeneration in aging and Alzheimer's disease. However, the association of neighborhood depr...
https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/bsa3.70045
about 1 month ago
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Happy Genetic Counselor Appreciation Day!๐งฌ 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
about 2 months ago
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Penn FTD Center Staff Highlight ๐ Cara Joyce, MPH is a Regulatory Project Manager at the Penn FTD Center for over 2 years. ๐Read more details on Cara in the blog post! Link in our bio!
about 2 months ago
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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!
about 2 months ago
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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. ๐๏ธ Nov 12th โฒ๏ธ 8:00-9:30AM ๐ Hynes - Room 104 Be sure to check out this symposium!
about 2 months ago
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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!
about 2 months ago
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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. ๐Check out our website for more information on Support & Resources
about 2 months ago
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The Penn FTD Center is here for another FTD Fact Friday! And we are here to help! ๐ Check out our Support & Resources ๐ Read our monthly blog ๐ Learn more about Observational Research or Clinical Trials Click the website link for more!
2 months ago
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Penn FTD Center Staff Highlight ๐ 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. ๐Read more details on Dahlia in the blog post! Link in our bio!
2 months ago
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The Penn FTD Center is here for another FTD Fact Friday! And we are here to help! ๐ Check out our Support & Resources ๐ Read our monthly blog ๐ Learn more about Observational Research or Clinical Trials Click the website link for more!
2 months ago
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๐กIn Penn FTD Centerโs 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!
2 months ago
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The Penn FTD Center is here for another FTD Fact Friday! And we are here to help! ๐ Check out our Support & Resources ๐ Read our monthly blog ๐ Learn more about Observational Research or Clinical Trials Click the website link for more!
2 months ago
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Register now for the 2025 Penn FTD Centerโs Annual Caregiver Conference! ๐ Monday, November 3, 2025 โฑ 8am-4:30pm ๐Smilow 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!
3 months ago
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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...
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'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.
https://www.yahoo.com/news/articles/lost-frontotemporal-dementia-changed-mind-100000445.html?guccounter=1
3 months ago
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๐ฐ 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!
3 months ago
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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 ๐
3 months ago
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The Penn FTD Center is here for another FTD Fact Friday! And we are here to help! ๐ Check out our Support & Resources ๐ Read our monthly blog ๐ Learn more about Observational Research or Clinical Trials Click the website link for more!
3 months ago
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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!
3 months ago
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We understand that care management can be tough. This October Care Management Monday, we are sharing tips on managing compulsive behaviors. ๐Check out our website for more information on Support & Resources
3 months ago
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The Penn FTD Center is here for another FTD Fact Friday! And we are here to help! ๐ Check out our Support & Resources ๐ Read our monthly blog ๐ Learn more about Observational Research or Clinical Trials Click the website link for more!
3 months ago
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PhD candidate at the UPennโs 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! ๐
3 months ago
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Penn FTD Center Staff Highlight ๐ Quinn Hlava, MRA is a Senior Clinical Research Coordinator who works on observational research, specifically the ALLFTD study and various imaging studies. ๐Read more details on Quinn in the blog post! Link in our bio!
3 months ago
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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
3 months ago
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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
3 months ago
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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
3 months ago
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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
3 months ago
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In honor of FTD Awareness Week 2025, the Penn FTD Center staff has put together a series of videos to share tips and information! Nurse Practitioner Gillian Bradley provides caregiver strategies for symptom management. Click on the link in our bio to watch now!
#endFTD
3 months ago
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World FTD Awareness Week takes place September 21-27, 2025! We will be sharing informational videos throughout the entire week to highlight different areas of expertise here at the center. You can join the movement by following
@theaftd.bsky.social
#endFTD
3 months ago
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Registration is now open for the 2025 Penn FTD Centerโs Annual Caregiver Conference! ๐ Monday, November 3, 2025 โฑ 8am-4:30pm ๐Smilow 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!
4 months ago
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The Penn FTD Center is here for another FTD Fact Friday! And we are here to help! ๐ Check out our Support & Resources ๐ Read our monthly blog ๐ Learn more about Observational Research or Clinical Trials Click the website link for more!
4 months ago
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The Unexpected Journey by Emma Heming Willis is out now! Lauren Massimo, Co-Director of the Penn FTD Center, contributed to The Unexpected Journey! Emma provided an exclusive highlight for the Penn FTD Center. Read more at the link in our bio and on our website!
4 months ago
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We understand that care management can be tough. This September Care Management Monday, we are sharing tips on cognitive examinations. ๐Check out our website for more information on Support & Resources
4 months ago
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The Penn FTD Center is here for another FTD Fact Friday! And we are here to help! ๐ Check out our Support & Resources ๐ Read our monthly blog ๐ Learn more about Observational Research or Clinical Trials Click the website link for more!
4 months ago
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๐ขLooking for the latest news from the Penn FTD Center? Want to stay up-to-date on research and trials? Make sure you are following the Penn FTD Center on all your social platforms. ๐All of our social media accounts can be found at the link in our bio!
4 months ago
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๐๏ธ Our amazing genetic counselor Laynie Dratch was featured on the DNA Dialogues podcast to share insights from the recent publication: โPatient-reported outcomes for remote and in-person visits for genetic counseling in adult neurology.โ ๐Listen now at the link in our bio!
4 months ago
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Penn FTD Center Staff Highlight ๐ Jessica Legaspi, MS manages the center's observational studies primarily focusing on the ALLFTD and CReATe ALS studies. ๐Read more details on Jessica in the blog post! Link in our bio!
4 months ago
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In our August blog, Penn FTD Center Clinical Research Coordinator Samantha Dengel interviews a spouse of a research participant to shed light on what it is like to care for and love someone with FTD and amplify caregiver voices. Find the blog post at the link in our bio!
4 months ago
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The Penn FTD Center is here for another FTD Fact Friday! And we are here to help! ๐ Check out our Support & Resources ๐ Read our monthly blog ๐ Learn more about Observational Research or Clinical Trials Click the website link for more!
5 months ago
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๐ฐ 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!
5 months ago
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In this monthโs Research Roundup, Postdoctoral Fellow Sheina Emrani, PhD outlines how researchers are studying whether neuroinflammation worsens cognitive outcomes during life in patients with frontotemporal lobar degeneration (FTLD). ๐Read now at the link in our bio or by visiting our website!
5 months ago
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