“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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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

Frontotemporal Degeneration: It’s more than just dementia

What is Frontotemporal Degeneration (FTD)?

FRONTOTEMPORALLOBES
FTD is an aging-related neurodegenerative disease affecting the frontal and temporal lobes of the brain, disrupting a variety of functions such as behavior, personality, language, movement, and in some cases, cognition.

According to the Association for Frontotemporal Degeneration (AFTD), the most telltale sign of FTD is a gradual and progressive decline in behavior and/or language. As the disease progresses, planning and organizing activities, behaving appropriately in public settings, and socializing generally become increasingly difficult for individuals with FTD.

The disease often occurs in a person’s 50s or 60s, but has been seen as early as 21 and as late as 80. It is the most common form of dementia in people under 60 years old.

Is FTD inherited?

When asked during a past Q&A with the Boston Globe, Murray Grossman, MD, director of Penn’s FTD Center, explained that FTD can be inherited, but that it is not typically the case. “Twenty-five percent of the patients we see with FTD have a high-risk family history,” he said, but the remaining 85 percent are considered “sporadic FTD.” In sporadic FTD, there is no known cause—genetic or environmental—and researchers are still searching for any signs of genetic changes that may be responsible for these random cases.

Is FTD curable?

There is currently no cure or treatment for FTD.

Some medications such as antidepressants, neuroleptics (antipsychotics), and dopaminergic agents used in Parkinson’s disease, can be prescribed to help manage symptoms, but should be treated on a case-by-case basis as there is always a risk for worsening symptoms, adverse reactions, and other unfavorable side effects.

A Family’s FTD Story

The video below, produced by CurePSP, tells the story of artist David Wetzl and his journey with Frontotemporal degeneration and gives a first-hand look at exactly what this disease can strip from you in your prime of life.

To learn more about FTD, visit:
The Penn FTD Center
The Association for Frontotemporal Degeneration


RELATED EVENT:

Penn FTD Center Caregiver Conference

 On May 20, 2016, the University of Pennsylvania’s Frontotemporal Degeneration Center will host their Annual FTD Caregiver Conference. This day-long event is for caregivers and anyone else interested in learning more about FTD and related conditions such as Amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease) and Corticobasal Degeneration (CBD).

This event is free and open to the public. Registration is required and opens on April 8, 2016.

Event Details:
Friday, May 20, 2016
8:00am – 4:30pm
Smilow Center for Translational Research
3400 Civic Center Boulevard
Philadelphia, PA 19104

For more information on the event, including the agenda, participating advocacy groups, and giving opportunities, please contact:
Christine Ray at rayc@mail.med.upenn.edu or (215) 349-5873

Out of town? If you plan on traveling to Philadelphia for the conference from another city or state, please visit the University of Pennsylvania’s visitor page for information on local accommodations.

To see coverage from last year’s 2015 FTD Caregiver Conference, click here.

Occupational Attainment in Frontotemporal Degeneration

According to new research from the Perelman School of Medicine at the University of Pennsylvania, doctors, lawyers and other “high level” professionals may have an advantage if diagnosed with Frontotemporal Degeneration (FTD).

Lauren Massimo, PhD, CRNP, a post-doctoral fellow at Penn’s FTD Center, and her fellow researchers working on this study believe that these individuals with higher level occupations typically build stronger “cognitive reserve,” aiding in the defense of this neurodegenerative disease which effects behavior, personality, and in some cases, language.

Read more in the full Penn Medicine News Release.

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

Caring for Caregivers: Conference Highlights Challenges for FTLD Caregivers

If you’ve never heard of Frontotemporal Lobar Degeneration, consider yourself lucky. If you are familiar with FTLD, you know that it strikes people in their prime – the average age of onset is 58, but ranges from 30 – 82. Over months or years, the neurodegenerative disease progressively causes people to lose control of their speech and language, as well as personality and social functioning. The disease is fatal, and currently has no cure.

Last weekend, Penn’s FTLD Center hosted its annual meeting for the caregivers of people with FTLD, as well as some of the related diseases – Amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease), Progressive supranuclear palsy (PSP), and corticobasal degeneration (CBD). The caregivers listened to the latest research and understanding of the diseases, and learned from caregiving experts about available resources and important caregiving skills.

Over the next few days, we’ll be posting short interviews from experts and looking into some of the topics covered at the conference – including the overlapping pathology behind these diseases, promising drug candidates from Penn’s drug discovery program, and the struggles caregivers face on a daily basis.

To start, we’ve compiled a transcript of live-tweets from the FTLD Caregiver Conference.

If you attended the conference, what information did you find most fascinating? For me, it was learning that they’re hoping to have an effective treatment for FTLD in 10 years. With an amazing team and the full-spectrum of research underway here at Penn, I don’t doubt it.