Penn FTD Center

Attending AAIC? The Penn FTD Center is co-hosting a reception with The Association for Frontotemporal Degeneration and all AAIC attendees interested in FTD research are invited to attend! The Frontotemporal Degeneration Social will take place on Tuesday, July 30th from 6pm-8pm at the Marriott Philadelphia Downtown. If you are attending AAIC, we hope to see you there!

Primary progressive aphasia, or PPA, is a disorder of language (aphasia) that is progressive in nature and not due to neurological diseases that are easily seen on an MRI like stroke, head trauma, and cancer. Our thoughts are with Wendy and her loved ones during this difficult time.

Wendy Williams diagnosed with primary progressive aphasia​ and frontotemporal dementia Wendy Williams' team revealed she has been diagnosed with primary progressive aphasia​ and frontotemporal dementia​.

Reminder to register for our 4th annual virtual familial conference, Uncovering the Genetics of Familial FTD/ALS, on Wednesday, February 21, 2024, from 3:00PM-6:00PM EST.
Attendees will have the chance to hear from genetic counselors, neurologists, and social workers on the genetics of FTD and ALS—and have the chance to ask your questions in real-time.

To view the agenda, register, and learn more, please visit our website here: https://www.pennftdcenter.org/familial-conference

Registrants will receive a link to the conference via email.
Thank you for your interest, and we look forward to seeing you virtually on the 21st.

Today is the last day to apply to become an FTD Research Ambassador. Apply here: https://upenn.co1.qualtrics.com/jfe/form/SV_6Xs7ImUurgKhtnU

Want to help spread the word about FTD research? Apply today to become an FTD Research Ambassador. Certification as an FTD Research Ambassador provides opportunities to influence and improve the FTD research process. Research Ambassadors will also be able to share information about the research process, and address common misconceptions about research, to patients and caregivers through support groups, conferences, social media, and other platforms. There is no cost for this virtual program. To apply, please visit this link: https://upenn.co1.qualtrics.com/jfe/form/SV_6Xs7ImUurgKhtnU

For more information, please visit our website at https://www.pennftdcenter.org/ftdcrliresearchambassadorprogram

Registration is open for our fourth annual virtual familial conference, Uncovering the Genetics of Familial FTD/ALS, on Wednesday, February 21, 2024, from 3:00PM-6:00PM EST.
Attendees will have the chance to hear from genetic counselors, neurologists, and social workers on the genetics of FTD and ALS—and have the chance to ask your questions in real-time.

To view the agenda, register, and learn more, please visit our website here: https://www.pennftdcenter.org/familial-conference

Registrants will receive a link to the conference via email.

Thank you for your interest, and we look forward to seeing you virtually on February 21, 2024.

Want to help spread the word about FTD research? Apply today to become an FTD Research Ambassador. Certification as an FTD Research Ambassador provides opportunities to influence and improve the FTD research process. Research Ambassadors will also be able to share information about the research process, and address common misconceptions about research, to patients and caregivers through support groups, conferences, social media, and other platforms. There is no cost for this virtual program. To apply, please visit this link: https://upenn.co1.qualtrics.com/jfe/form/SV_6Xs7ImUurgKhtnU

For more information, please visit our website at https://www.pennftdcenter.org/ftdcrliresearchambassadorprogram

Have you ever considered genetic testing but aren't sure if it's right for you?

On January 31st at 1pm EST, join this free webinar hosted by Les Turner ALS Foundation where Penn FTD Center genetic counselor Laynie Dratch discusses the role of a genetic counselor, addresses common questions about the genetics of ALS-FTD spectrum disorders, the genetic testing process, and more.

Stick around for a Q & A session post-presentation.

Register here: https://register.gotowebinar.com/register/233260727250953046

Proud to introduce Dr. Jeff Maneval and our episode talking all about a heavy topic. Aggression and agitation are often seen within the FTD disease trajectory and although the behaviors are unnerving, Dr. Maneval explains how to care for them with such a beautiful approach.

Episode 3 is live, y’all! Take a listen 🎧

Episode 2 of the Remember Me Podcast is live! Penn FTD Center Dr. Lauren Massimo discusses a common FTD behavioral symptom: Apathy. Listen here: https://www.remembermeftd.com/listen

We're thrilled to join podcast creators Rachael and Maria for season 8. Each episode will feature an expert from our center, and explores various topics related to FTD.

Episode 2 is live, y’all! This discussion features our girl, Dr. Lauren Massimo, and all her knowledge of around one of the most common behaviors seen in FTD … APATHY!

Dr. Massimo does an excellent job dissecting this heavy topic and provides a gentle approach to managing this difficult behavior.

Lauren, thank you for all you do for this community, the beautiful approach you take and the top notch level of care you provide. Eternally grateful for it all!

Don’t forget to read the companion blog post, link in bio.

💛

We're thrilled to announce season 8 of the Remember Me Podcast featuring the Penn FTD Center! Podcast creators Maria and Rachael chat with our experts about all things related to FTD. In this episode, co-director Dr. David Irwin answers a fundamental question: What is FTD?

For links to listen, visit the Remember Me Podcast website here: https://www.remembermeftd.com/listen

It’s with a big heart and lots of gratitude that we present SEASON EIGHT of the Remember Me Podcast. Working closely with the Penn FTD Center, we wanted to bring this innovative and unique approach to understanding behaviors to the masses! Pairing the science to the stories, each episode tackles a different component of FTD where the experts of Penn explain whyyyyyy we see certain behaviors, what’s happening in the brain and how we can manage the uncertainty.

Season 8 kicks off with no one other than the wonderful Dr. David Irwin. We are so appreciative of his work, his dedication and the fact that we get to call him a friend.

ALSO! A new edition this season ✨✨ we’ve collaborated with our friends to write companion blog posts for each episode, you can find on our website. This way you’ll have links to resources mentioned in each episode, and additional resources we’ve curated with .

Welcome to Season 8, y’all. Happy to have you here 🤍

Are you an individual diagnosed with FTD, a caregiver and/or loved one interested in sharing the word about FTD research? We've partnered with The Association for Frontotemporal Degeneration to facilitate this one-day virtual program to educate future FTD Research Ambassadors.

The FTD Clinical Research Learning Institute is a one-day virtual program that empowers individuals diagnosed with FTD, their caregivers and loved ones to be strong advocates in the field of FTD research by educating them on the clinical research process. Certification as an FTD Research Ambassador provides opportunities to influence and improve the FTD research process. There is no cost for this program.

This virtual program will be held on Tuesday, June 11, 2024, 9:00AM-3:30PM PT / 12:00PM-6:30PM ET. To apply, please complete the application by Friday, February 9th. Those who are accepted into the program will be notified in early March. The program agenda will be available on our website in the coming weeks. Topics will include FTD trials, ethics and informed consent, understanding research dissemination, FTD advocacy, and more. Apply here: https://upenn.co1.qualtrics.com/jfe/form/SV_6Xs7ImUurgKhtnU

For more information, visit our website at https://www.pennftdcenter.org/ftdcrliresearchambassadorprogram

We are thrilled to announce that the Penn FTD Center will be hosting our fourth annual virtual familial conference, Uncovering the Genetics of Familial FTD/ALS, on Wednesday, February 21, 2024, from 3:00PM-6:00PM EST.

Attendees will have the chance to hear from genetic counselors, neurologists, and social workers on the genetics of FTD and ALS—and have the chance to ask your questions in real-time.

The registration link and agenda will be made available in the coming weeks. If you would like to be added to our email list to receive a notification with the link, please sign up using the form at the bottom of our webpage, here:
https://www.pennftdcenter.org/familial-conference

Thank you to everyone who attended the Murray Grossman Memorial Symposium on Wednesday, both in person and online. The symposium was recorded and will be made available on our website in the coming weeks. Attendees and those on our email list will be notified and will receive the link in their email. If you would like to sign up for our email list, you can do so on our website at the bottom of the webpage:

Home | Penn FTD Center The Penn Frontotemporal Degeneration Center brings together an energetic team of creative clinicians and researchers dedicated to the investigation and treatment of early onset neurodegenerative conditions. Our team of experts include neurologists, neuropathologists, neuroscientists, geneticists, ...

"Having somebody understand what you're going through and explain it to you in ways that you can understand changed my life." Check out Penn FTDC genetic counselor Laynie Dratch's interview with 6abc Action News on the life-changing benefits of genetic testing:

Action News 5PM

Today is Genetic Counselor Awareness Day and we are celebrating the amazing work of our GC, Laynie Dratch, ScM, CGC (pictured). Laynie provides our patients with expert care and we're grateful to have her on our team. We would like to take this opportunity to share some resources with you.

To schedule a visit with a genetic counselor at Penn Neurology, call 215-662-3606 and request a neurogenetics appointment.

You can view more information about FTD genetics on our website, here: https://www.pennftdcenter.org/genetics

Every year, we host an FTD/ALS Familial Conference where we are joined by a variety of expert presenters, including genetic counselors, neurologists, and social workers, with presentations focused on the genetics of FTD and ALS and related issues. Information about our next conference is forthcoming. To view recordings from our previous conferences, you can visit our website here: https://www.pennftdcenter.org/familial-conference

If you would like to join our email list to receive invitations to events like this, please follow the link above and sign-up at the bottom of the webpage.

Reminder: Please register by this Wednesday, November 1st! Penn FTD Center's Annual Caregiver Conference will be held on Monday, November 13, 2023, at the Smilow Center for Translational Research in Philadelphia from 8:30am-3:30pm EST. More information here:

Penn FTDC Annual Caregiver Conference | Penn FTD Center We would like to invite you to the Penn Frontotemporal Degeneration (FTD) Center's Annual Caregiver Conference which will be held on Monday, November 13, 2023, at the Smilow Center for Translational Research from 8:30am-3:30pm EST.

Hi everyone! This is a reminder to register for our Annual Caregiver Conference if you have not already done so. Please register by November 1st here: https://securelb.imodules.com/s/1587/gid2/16/interior.aspx?sid=1587&gid=2&pgid=42698&cid=88553

This conference will be held on Monday, November 13, 2023, at the Smilow Center for Translational Research in Philadelphia from 8:30am-3:30pm EST. Please note, this conference will be in-person only. Most sessions will be recorded, and a link will be sent to our email list afterwards. Those who attend in person will have access to additional sessions that will not be recorded. For more information, you can visit our website here: https://www.pennftdcenter.org/caregiver-conference

If you would like to be added to our email list to receive the link to the recording of the conference, along with emails about future events and our quarterly newsletter, you can sign up using the form at the bottom of the webpage linked above.

Thank you, and we hope to see you in November!

We would like to invite you to the Penn Frontotemporal Degeneration (FTD) Center's Annual Caregiver Conference which will be held on Monday, November 13, 2023, at the Smilow Center for Translational Research from 8:30am-3:30pm EST.

Register here: https://securelb.imodules.com/s/1587/gid2/16/interior.aspx?sid=1587&gid=2&pgid=42698&cid=88553

The Penn FTD Center’s Annual Caregiver Conference is for those diagnosed with FTD, and their caregivers, family, and friends to access information and support. With presentations from leading experts in neuropsychology, clinical care, genetics, cognitive neuroscience, and more, attendees will hear the latest on innovative treatments, diagnostics, and practical caregiver strategies. As always, our goal is to empower caregivers and deliver real-time updates. The conference agenda is forthcoming.

Please note, this conference will be in-person only. Most sessions will be recorded and a link to the recording will be sent to our email subscribers afterwards. To be added to our list, please visit the bottom of our webpage at www.pennftdcenter.org

Those who attend in person will have access to additional sessions that will not be recorded.

If you have any questions, please reach out to us at [email protected]. If you are interested supporting this conference and future events, you can donate here: https://www.pennftdcenter.org/donate

Thank you for your interest in this event, and we hope to see you in November.

We have updated our clinical trials information. If you or someone you know might be interested in participating in research, you can access more information on our website, here:

Clinical Trials | Penn FTD Center This clinical trial research study is being conducted to assess the safety, tolerability, and effects of an investigational genetic therapy product called LY3884963 on progranulin protein (PGRN) levels in blood and cerebrospinal fluid (CSF).

As we near the end of , we would like to invite you to the Penn FTD Center's Annual Caregiver Conference which will be held on Monday, November 13, 2023 at the Smilow Center for Translational Research in Philadelphia from 8:30am-3:30pm EST. Registration info to come.

We were lucky enough to host the creators of the Remember Me podcast yesterday! We're very excited to be participating in their 8th season where our experts will speak about various topics relating to FTD. More information to come!

To quote from their website, "Rachael and Maria created Remember Me Podcast to generate awareness of dementia, specifically FTD, and this passion project has grown to foster a community of connectedness and understanding where people feel seen and heard." Remember Me Podcast

To listen to their podcast and find out more, you can visit their website here: https://www.remembermeftd.com/

Many other neurodegenerative conditions are associated with Frontotemporal degeneration (FTD). Some conditions, such as Amyotrophic Lateral Sclerosis (ALS), can co-occur with FTD. Other conditions are frequently confused with forms of FTD, and this includes early-onset variants of Alzheimer's disease. Yet other conditions share features with some forms of FTD, such as Lewy body disease and other variants of Parkinson's disease. The Penn FTD Center's research interests also include other neurological disorders such as Alzheimer's Syndromes, Parkinson's Syndromes and Rapidly Progressing Dementias.
For more information about these related disorders, you can visit our website at https://www.pennftdcenter.org/related-disorders

Related Disorders | Penn FTD Center Many other neurodegenerative conditions are associated with Frontotemporal degeneration (FTD).  Some conditions, such as Amyotrophic Lateral Sclerosis (ALS), can co-occur with FTD.  Other conditions are frequently confused with forms of FTD, and this includes early-onset variants of Alzheimer's di...

We have a new website! Click here to see our latest publications, information on clinical trials and observational studies, access to recordings of our previous conferences, upcoming events, and more:

Home | Penn FTD Center The Penn Frontotemporal Degeneration Center brings together an energetic team of creative clinicians and researchers dedicated to the investigation and treatment of early onset neurodegenerative conditions. Our team of experts include neurologists, neuropathologists, neuroscientists, geneticists, ...

Congrats to Penn FTDC's Galit Agmon who was featured in The Society for the Neurobiology of Language (SNL) September newsletter for her paper, “Um…, It’s Really Difficult to… Um… Speak Fluently”: Neural Tracking of Spontaneous Speech. Read here: https://direct.mit.edu/nol/article/4/3/435/116043/Um-It-s-Really-Difficult-to-Um-Speak-Fluently

“Um…, It’s Really Difficult to… Um… Speak Fluently”: Neural Tracking of Spontaneous Speech Abstract. Spontaneous real-life speech is imperfect in many ways. It contains disfluencies and ill-formed utterances and has a highly variable rate. When listening to spontaneous speech, the brain needs to contend with these features in order to extract the speaker’s meaning. Here, we studied how ...

Today marks the beginning of . Frontotemporal degeneration (FTD), or Frontotemporal dementia, refers to a family of disorders characterized by the progressive loss of neurons (brain cells) in the frontal and temporal regions of the brain. An estimated 10,000 people are diagnosed with FTD each year. Symptoms of FTD often first appear between the ages of 50 to 65 years of age. As FTD progresses, it can slowly deprive a person of their cognitive abilities, personality and eventually their independence. This week, we'll share resources, research updates, and more.