The 14th Annual Jane Wright Symposium on Parkinson’s Disease for Patients and Caregivers

Published by Benjamin Deck, Udall Coordinator 

The 14th annual Jane Wright conference was held on June 15th at the Sheraton Hotel on City Line Avenue in Philadelphia, PA. The Jane Wright conference is an annual symposium that brings together the local Parkinson’s community to hear presentations around a central theme and to make people with Parkinson’s (PwP) and their loved ones aware of available resources. The theme this year was, “Hot Topics in Parkinson’s Disease” and the attendance reached an all-time high of over 200 people.

Professor Emeritus of Neurology, Dr. Matthew Stern, MD opened the conference with his lecture on Parkinson’s history and discussed updates to James Parkinson’s original definition of Parkinson’s disease (PD). Some of the issues Dr. Stern outlined were disparate pathologies in PD, PD subtypes, and the idea that current diagnostic criteria do not allow for early diagnosis in PD. One precluding factor of early diagnosis is that motor symptoms are typically not present until later stages of the disease.

The second speaker was the newly appointed Director of Medicine at the Penn Neurological Institute, Dr. Andrew Siderowf, MD. Dr. Siderowf presented new therapeutics in PD such as Safinamide, Rytary, Droxidopa, and Primavanserin. Dr. Siderowf’s presentation also touched on newer surgical interventions for PD such as Focused Ultrasound and Duopa. The presentation then focused on disease modifying procedures and medications that are currently under development, i.e. gene therapy, alpha synuclein anti-body trials, and treatments specialized for specific genetic mutations in PD. View his presentation here.

Assistant Professor of Neurology, Dr. Lama Chahine, MD, spoke of biomarkers and the crucial role that they will play in the diagnosis, prognostication, and treatment of PD. Dr. Chahine made the compelling case for further research on biomarkers in PD by showing the subjectivity of in-clinic motor exams, which are currently the gold standard for a PD diagnosis in movement disorder clinics. Dr. Chahine emphasized that biomarker discovery in cerebral spinal fluid (CSF), blood, and tissue sampling (collected most recently for this trial), could one day diagnose patients earlier and/or better treat the disease.

The final speaker at this year’s Jane Wright Conference was Movement Disorders Fellow, Dr. Michelle Fullard, MD. Dr. Fullard’s presentation outlined the recent technological advances that are helping to deliver better and more accessible treatments. Telemedicine has been implemented in many clinics and decreases travel burden for PD patients who often find this to be a barrier to quality care. Telemedicine allows physicians to remotely diagnose and treat individuals through the use of telecommunications technology. Dr. Fullard also discussed wearable devices that can track a PD patient’s movements through the use of accelerometers and other such technology. The hope its that these devices would allow movement disorder specialists to better understand the motor complications of their patients.

JW Symposium 2017 picture

Lastly, Dr. Stern was awarded an Proclamation signed by Mayor Jim Kenney that decrees April as Parkinson’s Awareness Month in Philadelphia. The proclamation was presented by Ms. Lori Katz and a represenative from Mayor Kenney’s office (pictured above).

View all presentation slides here.

 

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World Elder Abuse Awareness Day 2017

weaad_rgb_small-1-300x300.jpgToday, June 15, 2017 is World Elder Abuse Awareness Day (WEAAD). Created in 2006 by the International Network for the Prevention of Elder Abuse and the World Health Organization at the United Nations, WEAAD strives to raise awareness of the cultural, social, economic and demographic issues of elder abuse and neglect. Elder abuse can present in several different forms such as physical or psychological abuse, neglect, or exploitation, and is an important public health and human rights issue that should be recognized as such.

“Every year an estimated 5 million, or 1 in 10, older Americans are victims of elder abuse, neglect, or exploitation. And experts believe that for every reported case of elder abuse or neglect, as many as 23.5 cases go unreported.” – USC Center on Elder Mistreatment

For a variety of educational tools & tips on how to identify, address, and prevent these issues, visit the University of Southern California (USC) Center on Elder Mistreatment’s WEAAD website. Information includes:

Show your support for World Elder Abuse Awareness Day by finishing the sentence below, downloading the image, and sharing your answer on social media! Don’t forget to use the hashtag #WEAAD!

Screen Shot 2017-06-14 at 2.19.45 PM

Download image here.

For more information on World Elder Abuse Awareness Day, click here.

Exercise and Aging: Finding the right program for you

Staying fit and active as you age can be a major challenge for some individuals. Whether it is due to an injury or medical condition or simply the normal changes that occur with aging, at some point our bodies just don’t quite function how they used to. Generally speaking, older adults often experience a slowing of movement, which can in turn lead to decreased activity followed by decline in function and ultimately, a loss of independence.

On Thursday, June 8, 2017, the University of Pennsylvania’s Division of Human Resources – Quality of Work Life and AREUFIT Health Services, Inc. hosted a workshop on “Exercise and Aging” open to all Penn faculty and staff to discuss safe and effective ways that older adults can work to maintain their function.

“As we age, our muscles tend to work on the “use it or lose it” principle,” said Micah Josephson, MS, representative of AREUFIT and leader of the workshop. There are two main neuromuscular changes that are often associated with aging – dynapenia, the loss of strength and power and sarcopenia, the loss of muscle tissue. However, research shows that exercise and physical activity can help slow or reduce the risk of these changes.

The question is, what type of exercise is the right one for you? Because all of our bodies are different, it is extremely important to understand what exercises and activities will best suit your needs or restrictions and help you achieve your goal.

Josephson presented some “official recommendations” for the following types of exercise: aerobic exercise (often referred to as “cardio”), strength training, balance training, and power training. When it comes to aerobic exercises like spinning, running, swimming, and a variety of group fitness classes such as Zumba, it is best to stick to 150 minutes of moderate intensity or 75 minutes of vigorous intensity per week.

Strength training, which focuses on major muscle groups such as the torso and legs, is Screen Shot 2017-06-12 at 11.47.06 AMrecommended 2+ days a week. The most important factor is to focus on the number of repetitions (reps) you can reach in a certain number of sets. For example, if you are strength training and doing bicep curls (pictured here), you should try to reach 8-12 repetitions doing about 3-4 sets of this movement. The amount of weight that you should use varies person to person, but it should be enough that you are maxing out around 8-12 reps while still maintaining form and control of the movement.

According to Josephson, balance training is suggested 2-3 days per week/60 minutes per week. The National Institute on Aging (NIH) Senior Health website offers some great tips and examples of safe ways to practice balance training.

Finally, for power training, Josephson says it is best to practice high-speed, low-resistance movements, recommending 2 sets of 12-15 reps twice per week. Using bicep curls as an example again, when power training instead of focusing on reaching a specific number of reps, you would focus on the velocity, or speed, of your movements. You want to perform the movement as quickly as you can while still maintaining control of the weight and yourself.

Regardless of your age or abilities, the first step in determining the best exercise program for you is to set your goal. When setting your goal, you have to think as specifically as possible. For example, the goal of “being able to keep up with the grandkids” does not look the same for every individual. For some, this may be getting up and down on the ground to play a game, while for others it may be running around the yard or going on hikes. These goals focus on very different muscle movements and your exercise program should be tailored accordingly.

If you are serious about exercising and maintaining a safe, active lifestyle as you age, Josephson has three overarching recommendations:

  1. Make the choice to exercise regularly
  2. Find a professional trainer who can help guide you
  3. If you cannot meet regularly with the trainer, meet periodically for check-ins and re-assessments

However, if you do not have access to a personal trainer, there are many other resources that can help you on this journey. The National Institute on Aging (NIA)’s Go4Life campaign is designed to help older adults fit exercise and physical activity into their daily lives. They focus on nutrition, exercise, and safety and offer a variety of tips and examples of exercises for maintaining endurance, strength, balance, and flexibility.

The NIA’s main website is also a great source of information, not only for tips on exercising, but also for facts on the many benefits and ways that it can improve your quality of life.

Genetics of Aging-Related Neurodegeneration: The Sylvan M. Cohen Annual Retreat & Poster Session 2017

077On Tuesday, May 23, 2017, the Institute on Aging (IOA) hosted their annual Sylvan M. Cohen Retreat and Poster Session in collaboration with co-sponsors, the Penn Neurodegeneration Genomics Center (PNGC).

The 2017 retreat focused on the ‘Genetics of Aging-related Neurodegeneration’ and for the second year in a row, it began with opening remarks from the Dean of the Perelman School of Medicine, J. Larry Jameson, MD, PhD. “I’m mainly here to thank you for your scientific collaboration,” said Dean Jameson. He used this time to express the importance and impact of these contributions in the field of genetics and aging, especially in trying to solve the puzzle of very complex conditions such as neurodegeneration.

Lectures were presented by Penn’s Gerard (Jerry) D. Schellenberg, PhD, Director of the PNGC, Adam Naj, PhD, Assistant professor of Epidemiology in Biostatistics and Epidemiology, and Nancy Zhang, PhD, Assistant professor of Statistics, as well as this year’s keynote speaker, Philip De Jager, MD, PhD, Associate Neurologist at Brigham and Women’s Hospital and Associate Professor of Neurology at Harvard Medical School.

Lectures:

  • “Alzheimer’s Disease Genetics; Progress in Gene Therapy” – Jerry Schellenberg, PhD
  • “Genetic Risk Factors Associated with Coincident Alzheimer’s and Parkinson Disease in Neuropathologically Confirmed Cases” – Adam Naj, PhD
  • “Structural Variant Profiling in Alzheimer’s Disease Genetics” – Nancy Zhang, PhD
  • “The molecular network map of the aging cortex: v1.0: an integrative approach targets the epigenomic and inflammatory components of Tau pathology” – Philip De Jager, MD, PhD

As usual, the event concluded with the annual poster session on aging. Prizes were awarded to the top posters in each of the following categories: Basic Science and Clinical Research/Education & Community.

Poster Winners:

BASIC SCIENCE:

1st Place:

172Title: “Integrative analysis identifies immune-related enhancers and IncRNAs perturbed by genetic variants associated with Alzheimer’s disease”
Presenter: Alexandre Amlie-Wolf
Authors: Alexandre Amlie-Wolf, Mitchell Tang, Jessica King, Beth Dombroski, Elizabeth Mlynarski,Yi-Fan Chou, Gerard D. Schellenberg, Li-San Wang
Affiliation(s): University of Pennsylvania, Genomics and Computational Biology Graduate Group

2nd Place:

173Title: “Differential Vulnerability to a-synuclein Pathology Among Neuronal Subpopulations”
Presenter: Luna Esteban
Authors: Luna Esteban, Dawn M. Riddle, Virginia M.Y. Lee, Kelvin C. Luk
Affiliation(s): Center for Neurodegenerative Disease Research

 


Clinical Research/Education & Community

1st Place:

175Title: “Correlates of Sleep Indices Among Community Dwelling Older Adults Enrolled in a Collaborative Care Management Program”
Presenter: Ashik Ansar
Authors: Ashik Ansar, MD, PhD, Shahrzad Mavandadi, PhD, Kristin Foust, Suzanne DiFilippo, RN, Joel E.. Streim, MD, David W. Oslin, MD
Affiliation(s): Department of Psychiatry, Perelman School of Medicine, University of Pennsylvania

2nd Place:

176Title: “The Impact of Cognitive Reserve and Brain Atrophy on Survival in Neurodegenerative Diseases”
Presenter: Carrie Caswell
Authors: Carrie Caswell, MS (1), Sharon X. Xie, PhD (1), Murray Grossman, MD, EdD (1), Corey T. McMillan, PhD (1), Lauren M. Massimo, PhD, CRNP (1,2)
Affiliation(s): (1) University of Pennsylvania, (2) Penn State University

To view the full lectures from the 2017 Sylvan M. Cohen Annual Retreat, click here.

To view more photos from the 2017 Sylvan M. Cohen Annual Retreat, click here.

 

“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.

Eliezer Masliah, MD, Director of NIA’s Division of Neuroscience visits Penn

EliezerMasliah_Flyer5217On Tuesday, May 2, 2017, Eliezer Masliah, MD*, Director of the National Institute on Aging’s (NIA) Division of Neuroscience, paid a visit to the University of Pennsylvania’s Institute on Aging (IOA), Center for Neurodegenerative Disease Research (CNDR), and Penn Neurodegeneration Genomics Center (PNGC).

The reason for Dr. Masliah’s visit was not just to learn about the neurodegenerative disease and aging-related research that is taking place in these centers here at Penn, but also to see how they all collaborate and work toward mutual goals. This gave him the opportunity to see firsthand how NIA and National Institutes of Health (NIH) funding is being used and made worthwhile to support the groundbreaking work of these centers.

Several topics were covered during the visit including the inception and mission of the new Penn Neurodegeneration Genomics Center (PNGC), directed by Gerard D. Schellenberg, PhD, and its five NIH-funded projects, the Alzheimer’s Disease Genetics Consortium (ADGC), Alzheimer’s Disease Sequencing Project (ADSP), Consortium for Alzheimer’s Sequence Analysis (CASA), Center for Genetics and Genomics of Alzheimer’s Disease (CGAD), and the NIA Genetics of Alzheimer’s Disease Data Storage Site (NIAGADS). Dr. Schellenberg and other PNGC members, including co-director Li-San Wang, PhD, associate professor of Pathology and Laboratory Medicine and principal investigator of NIAGADS, presented some of the current work and future plans for PNGC to achieve their overarching goal to “completely resolve the genetics of Alzheimer’s disease.”

After the morning session, Dr. Masliah joined John Q. Trojanowski, MD, PhD, Director of the IOA, and Virginia M.-Y. Lee, PhD, Director of CNDR, with several of their lab members as well as several Penn faculty working in neurodegeneration, for an open discussion on the multidisciplinary approach of the IOA and CNDR. A key feature of these centers is their ability to collaborate across many different disciplines within the University of Pennsylvania’s Perelman School of Medicine. This includes faculty members from several different departments such as Pathology and Laboratory Medicine, Neurology, Psychiatry, Geriatric Medicine, and Epidemiology to name a few.

Among the many topics discussed, one that was of particular interest to Dr. Masliah was the large number of young investigators and finding out what it was that attracted them to Penn. Many of the lab members were eager to participate and to share their outlook on why Penn was the right place to start their research career. Overall, they agreed that the collaborative, multidisciplinary nature of these centers is what appealed to them most. They also praised Penn for its training and the encouraging environment that it provides for applying for research grants and other funding opportunities. Additionally, Penn is well known for its state of the art databases and data sharing, providing top-notch integration and access to resources for its investigators. Dr. Masliah was especially impressed with CNDR’s Integrative Neurodegenerative Disease Database (INDD) which tracks nearly 17,000 patients and/or research subjects at Penn’s several neurodegenerative disease related centers.

The visit concluded with a lecture by Dr. Masliah, titled “Advancing the National Plan to Address AD through National and International Collaborations.” During his talk, Dr. Masliah discussed the recent $2 billion NIH budget increase which includes $400 million new Alzheimer’s disease funds, new NINDS funding opportunities in partnership with NIA on Lewy body dementia (LDB), and the 17 new Alzheimer’s disease FOA’s.

In terms of what to expect for the future, Dr. Masliah says to stay tuned for changes in pay-lines for FY17, more funding for fellowship and K awards, and more funded FOA’s and 27 new FOA’s.


* In his position as the Director of the NIA’s Division of Neuroscience, Dr. Masliah oversees the world’s largest research program on Alzheimer’s disease-related dementias and cognitive aging. He is an internationally renowned neuroscientist and neuropathologist and has approximately 800 original research articles and 70 book chapters. 

Unlocking the Mysteries of Delirium

What is delirium and how should we handle it?

EdwardMarcantonio_FlyerLast month, Edward Marcantonio, MD, MS, the IOA’s most recent visiting scholar and professor of Medicine at Harvard Medical School*, offered some answers to these questions during his lecture at the University of Pennsylvania.

In the 1980’s, as he was just beginning his career in the medical field, Dr. Marcantonio was taught that it was essentially “normal” for older people to go a little crazy – or “bonkers” as he calls it – during their hospital stay. The belief was that there really was not much that could be done about it, but if the symptoms became overly bothersome, prescription medications such as haloperidol or diazepam — drugs commonly used for mental or psychiatric disorders — would “take care of it.”

Today, while we are much better at recognizing what delirium actually is – and understanding that it is not “normal” – there is still some confusion across disciplines in the terminology used to identify this condition. Delirium is often referred to as acute confusional state, altered mental status, subacute befuddlement, or postoperative psychosis.

Regardless of what term is used, the diagnosis of delirium, or any of the other aforementioned names, is characterized by confusion, restlessness, and a disturbance in attention and awareness that develops acutely and tends to fluctuate. Delirium is typically referred to as one of two types—prevalent delirium or incident delirium. Prevalent delirium is when the condition is present and observed at the time of hospital admission and incident delirium develops during the hospital stay.

Delirium is even more common than most people realize. According to Dr. Marcantonio, it is experienced in 30-40% of medical inpatients over 70 years old, 15-50% of surgery patients over 70 years old, and at least 75-80% of intensive care unit patients over 18 years old.

In his line of research, Dr. Marcantonio focuses on two main aims: 1) improving delirium identification at the bedside and 2) understanding the pathophysiology of delirium and its association with dementia.

Improving delirium identification at the bedside

Because symptoms of delirium can come and go and vary in severity, identifying it can be quite a challenge. “When I got started in the field there were a number of studies that sent research teams out doing gold standard delirium assessments and then compared that to what was diagnosed in clinical care and it turned out that less than 50% of cases were recognized,” said Dr. Marcantonio.

In the 1990’s, the Confusion Assessment Method (CAM) was developed to help detect delirium in patients. The CAM looks at four key features: 1) acute change/fluctuating course, 2) inattention, 3) disorganized thinking, and 4) altered level of consciousness. In order to officially diagnose delirium according to the CAM diagnostic algorithm, the patient must be experiencing both features 1 and 2, in addition to either 3 or 4. While recognizing these features as signs of delirium can produce a successful diagnosis, there still needed to be a standardized way to identify these features in the patients. With this in mind, Dr. Marcantonio developed a series of methods and assessments for detecting delirium – some taking as little as 30 seconds to administer.

Learn more about these assessments in Dr. Marcantonio’s full lecture starting at 0:20:28:
Full lecture

Understanding the pathophysiology of delirium and its association with dementia

Although a variety of situations, such as dehydration, visual or hearing impairment, immobility, and sleep deprivation, can increase the chances of developing delirium, current research suggests that one of the strongest risk factors – aside from aging – is dementia.

One emerging hypothesis is that delirium may represent a state of neuroinflammation. It is believed that this neuroinflammation could be the link between delirium and dementia and if this theory is confirmed, it could have some very important therapeutic effects for both conditions.

Learn more about the link between dementia and delirium in Dr. Marcantonio’s full lecture starting at 0:40:05:
Full lecture

Although we have come a long way over the years to better understand delirium, there is still much work left to do. The ultimate goals are to establish effective and efficient assessments of delirium as a part of daily hospital vital sign checks and to develop pathophysiologically-based treatments to improve the short and long-term outcomes of this condition.

To view the full lecture, click here.

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* Dr. Marcantonio is also the Section Chief for Research in the Division of General Medicine and Primary Care at Beth Israel Deaconess Medical Center (BIDMC).