Penn FTD Center

Did you know: videos and presentations for caregivers from carers and researchers are available for free online from the most recent International Conference on FTD (ICFTD 2018)? These resources are a chance to learn about what top FTD researchers from all over the world are working on. https://redcap.sydney.edu.au/surveys/?s=MK33X9E7LA #ICFTD2018 #FTD #PennFTDC

Thinking of skipping that appointment? Here's 7 reasons you should follow up with your neurologist!

Penn FTD Center staff presented research this past weekend at the International Neuropsychological Society's 2019 Conference in NYC! Research Coordinators Jess Bove and Molly Ungrady proudly showed off their research posters at the event. They were joined by former FTD Center staff Amy Halpin (2nd year clinical psychology student at the university of Maine), Eileen Moran (4th year clinical psychology student at Fordham Univeristy, not pictured) and Rebecca Williams (4th year clinical psychology student at Drexel University, not pictured). Check out the poster photos for more information on Jess's and Molly's research. #PennFTDC #INS2019 #research

"I am just thankful that she is still happy to see me & knows that I am someone that makes her feel special." This blog post by a daughter and caregiver reminds us that families affected by FTD will never lose the ability to connect in a loving way. Today our team at the FTD Center is wishing love to everyone whose life has been touched by neurodegenerative disease. https://ftdjourney.blogspot.com//im-no-longer-daughter-in- #dementia #ThinkFTD #PennFTDC

Dr. David Irwin of the Penn FTD Center is a lead researcher and clinician looking at Lewy Body dementia (LBD). One of the ways Dr. Irwin studies LBD, FTD and other neurodegenerative diseases is by looking at brain tissue. A hallmark of LBD is the Lewy Bodies which can be seen in the brain tissue; these are abnormal clumps of the protein alpha-synuclein. Common symptoms of LBD include Parkinson's-like tremors, movement problems, hallucinations and difficulty with attention. You can learn more about LDB from the Lewy Body Dementia Association: https://www.lbda.org/content/intro-to-lbd #PennFTDC #dementia #research

Our research doctors perform over 100 lumbar punctures (spinal taps) annually. While the procedure can sound intimidating, local anesthesia is used for this safe and routine practice, in a way that's similar to getting a dental filling. Lumbar punctures help us learn so much about #dementia and assist with accurate diagnosis. By collecting the fluid that surrounds the brain and spinal cord, we can look at the proteins that may be present in the brain, without performing inva...sive surgery. In this article, our colleagues at the Penn Memory Center describe how they are using data from lumbar punctures to learn more about Alzheimer's disease. We are using similar methods in our research on #FTD. For example, we can perform a lumbar puncture before and after administering an experimental treatment to see if the treatment had an effect on levels of protein in the brain which we think are linked to (and possibly causing) some kinds of dementia. If the treatment works as intended then we will see a drop in levels of the target protein after the second lumbar puncture. If you're interested in being a part of a research study please call us at 215-349-5863 for more information. #PennFTDC

Music is a powerful tool for self-expression. For people living with a type of dementia called Primary Progressive Aphasia (PPA), it is challenging to communicate using words, but musical ability may remain. This #ThrowbackThursday we are revisiting a case study by Penn FTD Center staff about a remarkable person with semantic-variant Primary Progressive Aphasia whose musical talent was evident despite his loss of ability to communicate through language. This semi-professio...nal harpsichord player (an instrument related to the piano) could not only perform unfamiliar pieces but also creatively embellished extra notes for added flair. Do you have an experience with using #music to connect with a person living with #dementia? Share it with us in the comments. Read the article here: https://jamanetwork.com/jo/jamaneurology/fullarticle/802250 #PennFTDC #Research

There are many ways to approach giving care and comfort to a person living with dementia. These thoughtful words written from a daughter to her mother with dementia, on a whiteboard in her room, helped to reduce anxious phone calls. Even small acts of caring can make a difference every day. #dementia #caregiving #PennFTDC (source: Reddit)

If you are living with CBD or PSP (corticobasal degeneration and progressive supranuclear palsy), or you are a family member or caregiver, check out the Cure PSP, Inc. support network. You can request a packet of informational materials by mail free of charge or find a local support group. https://www.psp.org/ineedsupport/ #curepsp

New research by Dr. Naomi Nevler and other #PennFTDC staff has found that the way people talk can hold clues about their brain. She looks at speech patterns as an outcome measure for Primary Progressive Aphasia (PPA). In her new article, she shows that by analyzing recordings of people speaking, researchers can get information about likely damage to specific areas of the brain. This finding will help future researchers to get a deeper understanding of aphasia. It could also be used in clinical trials to get information about how well experimental treatments are working. https://onlinelibrary.wiley.com/doi/full/10.1002/acn3.653 #aphasia

Fresh Research Friday: Katerina Placek, Dr. Corey McMillan, and other FTD Center staff are exploring the genetic factors underlying the link between FTD and ALS. About 50% of patients with ALS will develop symptoms of FTD. We aim to better understand why some people with ALS develop FTD, and why there is so much variation in the way both FTD and ALS present in different people. This new research looks at a particular gene which impacts the expected course of illness. The findings could help clinicians to give patients a better forecast of the likely course of their disease. It could also help researchers to find the right patients to take part in clinical trials, which would improve the likelihood of identifying a useful drug or treatment. Full article can be found here: https://www.sciencedirect.com//arti/pii/S0197458018303567