“Through the Eyes of the Caregiver: Frontotemporal Degeneration (FTD) and the Penn FTD Center” premieres at the Penn FTD Center Caregiver Conference 2017

On Friday, May 12, 2017, the Penn Frontotemporal Degeneration (FTD) Center hosted its 9th annual Penn FTD Caregivers Conference at the University of Pennsylvania. The day-long conference held at the Smilow Center for Translational Research welcomed 150 attendees and consisted of a series of lectures that covered information around the latest scientific advances in research on FTD and its related disorders, such as Amyotrophic lateral sclerosis (ALS) also known as Lou Gehrig’s Disease and Corticobasal degeneration (CBD), as well as practical caregiving issues such as strategies for symptom management, understanding the genetics of FTD and genetic testing options, respite and supportive resources for caregivers, and legal and long-term care planning.

One of the highlights of this year’s conference was the premiere of “Through the Eyes of the Caregiver: Frontotemporal Degeneration (FTD) and the Penn FTD Center,” a short film sharing the stories of three caregivers whose loved ones are patients at the Penn FTD Center.

“The brunt of this disease falls solely on those closest to the individual with the disease unfortunately and it is very difficult to navigate the healthcare system and obtain the types of resources that give structure to a patient’s day-to-day life and to help a caregiver keep a patient safe and cognitively stimulated,” said David Irwin, MD, assistant professor and Cognitive Neurologist in the Penn FTD Center. The goal of this video is to show caregivers and family members of those with FTD that they are not alone in this life-altering process and that there are many support groups and community and medical resources available to them – including many at the Penn FTD Center – to help them every step of the way.

Watch “Through the Eyes of the Caregiver: Frontotemporal Degeneration (FTD) and the Penn FTD Center”*:

Two Penn FTD Caregivers Conference sponsors, the Alzheimer’s Association Delaware Valley Chapter and the Association for Frontotemporal Degeneration (AFTD), were also in attendance to answer questions and present information on the many advocacy and community resources that they offer for patients with FTD or related disorders and their families and caregivers.

Learn more about the Penn FTD Center at: https://ftd.med.upenn.edu

* Learn more about each individual caregiver by watching their full story! Click the “i” icon bubble in the top right hand corner of the video for a drop down menu with links to each caregivers story! If you are watching on a mobile phone, click the title of the video which will open a drop down menu containing the links to each caregiver’s story as well as a link to the Virtual Tour of Penn’s FTD PPG and Penn FTD Center to learn more about the FTD research and care taking place at Penn.

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CNDR Celebrates 25 Years of Groundbreaking Research

This year, Penn’s Center for Neurodegenerative Disease Research (CNDR) is celebrating 25 years of groundbreaking research.

Celebrating 25 Years

In honor of this milestone, Penn Medicine organized an intimate anniversary event generously hosted by longtime supporters and friends of CNDR, Bob Lane, who is also an Institute on Aging External Advisory Board (IOA EAB) member, and his wife, Randi Zemsky, at their home in the Rittenhouse Square section of Philadelphia.

The event celebrated the work of CNDR over the past 25 years and highlighted research breakthroughs still on the horizon. It was also an opportunity to bring together and thank many of the Center’s supporters. The event was attended by David B. Roth, MD, PhD, Chair of the Department of Pathology and Laboratory Medicine at the University of Pennsylvania, CNDR researchers, IOA EAB members, supporters of the Center and close friends of the hosts.

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The History

— from “A Conversation with Drs. Lee and Trojanowski,” an article by Lisa Bain featured in the CNDR 25th Anniversary special edition newsletter (page 3) — 

Some twenty-five years ago when John Q. Trojanowski, MD, PhD, first envisioned a Center for Neurodegenerative Disease Research (CNDR), Virginia M.-Y. Lee, PhD, MBA, saw only the additional paperwork that would be required. Since they were both already well established in the field, she thought, “what do we need a center for?” But he convinced her that branding and identifying CNDR as a common locus for studies of Alzheimer’s (AD) and Parkinson’s (PD) disease as well as Frontotemporal lobar degeneration (FTLD) and Amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease was very important to pursue; and they both knew that the mission — to find cures for these neurodegenerative diseases — was not something that they alone could solve.

They would need a team, infrastructure, an environment that would be welcoming to a multidisciplinary group of collaborators (see Figure 1) and of course, funding. “And that is the dream for CNDR that has come true,” said Trojanowski.

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Get the full story of CNDR’s history, mission, research, and programs in the 25th Anniversary special edition newsletter here:

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CNDR’s Annual Marian S. Ware Research Retreat Through the Years

Each year, CNDR hosts its annual Marian S. Ware Research Retreat to highlight any current or groundbreaking discoveries at CNDR and in the field of neurodegenerative disease research at large. Since the first event in 2000, CNDR has covered a variety of themes from genetics to training the next generation of scientists. Stay tuned for information on CNDR’s 2017 Research Retreat, but for now, take a look back at some of the topics covered in the past:

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You can also view an interactive timeline, including lists of past Retreat speakers, here!
(view in 3D mode for best experience)

Learn more about CNDR at: www.med.upenn.edu/cndr

 

 

A behind-the-scenes look at Penn’s Frontotemporal degeneration (FTD) research and care

Frontotemporal degeneration, or FTD, is a neurodegenerative disease that manifests clinically as a change in behavior — affecting one’s personality — or a disorder of language, sometimes accompanied by motor weakness or involuntary movements. These symptoms are associated with the accumulation of a specific kind of pathologic protein in the brain, including tau or TDP-43.

Through the University of Pennsylvania’s Frontotemporal degeneration Program Project Grant (PPG), led by Virginia M.-Y. Lee, PhD, MBA, and Frontotemporal Degeneration Center, led by Murray Grossman, MD, EdD, a collaborative team of Penn Medicine researchers and clinicians strive to improve the lives of those affected by FTD.

Take a behind-the-scenes look at their work through our Virtual Tour:

To learn more about the Penn FTD Center, visit: ftd.med.upenn.edu

To learn more about the FTD PPG and related research, visit: http://www.med.upenn.edu/cndr

ALS and FTLD on Same Spectrum of Disease

Through years of research, we’re finding that motor neuron diseases share some of the same pathology as cognitive disease.

Watch as Leo McCluskey, MD, MBE, associate professor of Neurology and medical director of Penn’s ALS Center, explains how Amyotrophic lateral sclerosis (ALS)  shares similar disease causes with another neurodegenerative disease – Frontotemporal Lobar Degeneration (FTLD), and what this means for patients with both ALS and FTLD.


For more information on ALS, visit Penn’s ALS Center, a certified ALS Association Center, or the ALS Association.

Hope on Horizon for FTLD

For families touched by Frontotemporal Lobar Degeneration (FTLD), or any disease that has no cure, a cure can’t be found soon enough.

At our recent FTLD Caregiver Conference, we caught up with Murray Grossman, MD, EdD, director of the Penn FTLD Center, to ask him about the progress in FTLD research. His comments during the conference were very promising, saying that “we’re on the cusp of disease-modifying drugs,” for frontotemporal lobar degeneration, with a goal of having a treatment for FTLD in 10 years.

In this video, Dr. Grossman explains the latest biological understanding of the disease, improvements in diagnostic tools, and efforts towards finding treatments that modify or stop the progression of FTLD and related diseases.

If you’re interested in clinical trial information for FTLD, visit the Penn FTLD Center website, or check back here for updates.