The University of Pennsylvania Frontotemporal Degeneration Center (Penn FTD Center) Senior Clinical Research Coordinator Ashlyn O’Halloran recently had the pleasure of interviewing Mary Lou Falcone, a well-known classical musical publicist, performer, and educator turned advocate for Lewy body dementia (LBD) awareness. Her book, I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia, featuring artwork by her late husband, Nicky Zann, leads readers through a movi

Patients at the Penn FTD Center may receive care from a Nurse Practitioner (NP) in addition to their physician. NPs are registered nurses with advanced graduate training and clinical experience, bringing particular strengths in patient education, care coordination, and holistic, person-centered care. They are highly skilled in addressing complex symptom management, supporting caregivers, and helping patients and families navigate the complexities of the healthcare system. Pen

The holidays can bring joy, connection, and celebration, but they can also present unique challenges for families supporting a loved one living with frontotemporal dementia (FTD). Changes in routine, crowded gatherings, and sensory overload can quickly become overwhelming. With a bit of planning and a focus on comfort, you can create moments that feel meaningful and manageable for everyone. Here are some practical strategies to help your loved one and your whole family naviga

My name is Samantha Dengel, and I am a Clinical Research Coordinator at the Penn FTD Center. During my time at the Penn FTD Center, I...

A native Midwesterner, Linde is a practicing RN, wife, and mother to two beautiful young daughters. She is also known as a fierce and outspoken advocate to find a cure for Frontotemporal Dementia (FTD). She is a second-generation caregiver, who assisted caring for her grandmother while still at a very young age. Following her grandmother’s death, Linde soon became her mother’s primary caregiver, when her mother subsequently developed symptoms of what turned out to be a geneti

When people ask what I do for a living, I say I work in clinical research, which doesn’t reveal much at first. But when I mention that I...

The Penn FTD Center understands that traveling with your loved one can be difficult. You are entering a new chapter for your family, and...

My name is Mara Bloom, and I am a Clinical Research Coordinator at the University of Pennsylvania Frontotemporal Degeneration Center...

Get to know the Penn FTD Center staff! Learn more this month from Penn FTD Center Clinical Research Coordinator Lauren Bracken in the...

Come prepared for your initial visit! As you work with your Clinical Research Coordinator (CRC) to plan your initial study visit, you may...

The objective of observational research is to observe participants naturally, without any interventions or treatments. Observational...

This September, researchers and clinicians represented the Penn FTD Center at the 14th international conference on frontotemporal...

Cure MAPT FTD is an organization dedicated to awareness, advocacy, and connection for all those affected with a MAPT genetic mutation causing Frontotemporal Dementia (FTD). As stated on the Cure MAPT FTD website, “The MAPT gene encodes “microtubule-associated protein tau” which is then expressed within the neurons in the brain. Mutations in the MAPT gene can exert several different effects on how this process functions. These differences in function can be unique to each spec

In the Penn Frontotemporal Degeneration Center (Penn FTD Center), we spend a lot of time talking to care-partners about how to keep their...

A patient with FTD was referred for genetic counseling. What can we expect in the genetic counseling visit? A genetic counselor is a...

As a Senior Clinical Research Coordinator with the Penn FTD Center for just over three years, I have had the pleasure of getting to work...

We are incredibly excited to announce this year’s Annual Penn FTD Center Caregiver Conference Keynote Speakers, our wonderful friends Rachael Martinez and Maria Kent-Beers, from the Remember Me Podcast! The Remember Me Podcast and Community (https://www.remembermeftd.com/) were created to generate awareness of dementia, specifically FTD. Rachael and Maria were both caregivers for their respective parents with FTD, and their self-proclaimed ‘passion project’ has grown into a l

Many families living with FTD benefit from having help at home from a professional agency. These home care services range from medical care to help with daily tasks and companionship. While many families know that skilled nursing is available in the home, helpful therapies such as physical, occupational and speech therapy can also be performed at home. In addition to the convenience of home care, being in a familiar environment is comforting for many people with FTD. Cynthia

Some of our patients ask why they need to come in for clinical follow-up appointments. After all, there is no cure for dementia yet, so why take time out of a busy schedule to come back? To ensure continuity of care and proper management of this rare disease, it is imperative that patients return for their follow-up appointments. Below, we list the top 7 reasons it’s crucial to keep your follow-up appointments with your neurologist. Accurate diagnosis. While our physicians ar