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.

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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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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

 

 

CNDR Researcher receives second place prize for poster on Alpha-Synuclein at 2016 Udall Center Directors Meeting

Last month, Chao Peng, a post-doctoral researcher at the University of Pennsylvania’s Center for Neurodegenerative Disease Research, won a second place poster prize at the 2016 Udall Center Directors Annual Meeting.

Title: “Distinct Pathological a-Synuclein Strains in Glial Cytoplasmic Inclusions and Lewy Bodies”
Presenter: Chao Peng
Authors: Chao X. Peng, Ronald Gathagan, Dustin J. Covell, Anna Stieber, Coraima Medellin, John L. Robinson, Bin Zhang, Kelvin C. Luk, John Q. Trojanowski, Virginia M.-Y. Lee

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Chao Peng (second from the right) with Walter Koroshetz, MD, Director of NINDS (far left), and his fellow poster winners at the Udall Center Directors Meeting.

Peng’s poster was on the properties of the misfolded alpha-synuclein protein in different neurodegenerative diseases.

Alpha-synuclein is known for playing a key role in the development of Parkinson’s disease (PD), however, this protein is not unique to PD. Alpha-synuclein is also present in the brains of patients with Lewy body dementia (LBD) and Multiple system atrophy (MSA).

During a video interview with the Institute on Aging (see below), Chao Peng explains that alpha-synuclein accumulation is also present in almost 50% of Alzheimer’s disease cases.

While these diseases all show signs of this same misfolded protein, they actually exhibit very different pathological and clinical behaviors than one would experience with Parkinson’s disease—but how?

Chao Peng and his colleagues at CNDR are using multiple different cell and animal models to better understand not only how this occurs and why the same misfolded protein can cause one disease in one patient but something different in others, but what this could mean for potential treatments. Learn more here:

CNDR’s 2016 Marian S. Ware Research Retreat: “Alzheimer’s and Parkinson’s Disease Drug Discovery”

On Tuesday, October 11, 2016, Penn’s Center for Neurodegenerative Disease Research (CNDR) hosted its annual Marian S. Ware Research Retreat. This year, the theme of the event was “Alzheimer’s and Parkinson’s Disease Drug Discovery” and was organized by Kurt Brunden, PhD, Director of Drug Discovery and Research Professor at CNDR.

Presenters included David M. Holtzman, MD of Washington University School of Medicine and Laura Volpicelli-Daley, PhD of University of Alabama, Birmingham, as well as industry representatives, Richard Ransohoff, MD of Biogen, Inc., and Mark Forman, MD, PhD of Merck & Co., Inc., in addition to several postdoctoral researchers from Penn.

Throughout the day, guests were invited to browse the nearly 50 neurodegenerative disease research related posters on display for the annual poster session. The event concluded with awards given to the top three posters of the day.

First Place

Title: “alpha-Tubulin Tyrosination and CLIP- 170 Phosphorylation Regulate the Initiation of Dynein-Driven Transport in Neurons
Presenter: Jeffrey Nirschl
Authors: Jeffrey J. Nirschl, Maria M. Magiera, Jacob E. Lazarus, Carsten Janke, Erika L. F. Holzbaur

Second Place:
Title: “Monitoring Conformational Changes in alpha-Synuclein During Aggregation and Small Molecule Treatment”
Presenter: Conor Haney
Authors: Conor M. Haney, John J. Ferrie, Tiberiu Mihaila, Marcello Chang, Jimin Yoon, E. James Petersson

Third Place:
Title: “Distinct Pathological a-Synuclein Strains in Glial Cytoplasmic Inclusions and Lewy Bodies”
Presenter: Chao Peng
Authors: Chao X. Peng, Ronald Gathagan, Dustin J. Covell, Anna Stieber, Coraima Medellin, John L. Robinson, Bin Zhang, Kelvin C. Luk, John Q. Trojanowski, Virginia M.-Y. Lee

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Presentations* (click to download):

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*Please note: Not all presentations can be shared online due to unpublished data.

Penn Medicine Celebrates a Milestone with its 5th Annual 5K for the IOA and the Memory Mile Walk

On Sunday, September 25, 2016, Penn Medicine celebrated the 5th anniversary of its annual 5K for the IOA and Memory Mile Walk!

Nearly 500 runners, walkers, and spectators turned up bright and early for the 3.1-mile race through Penn Park and 1-mile walk across the University of Pennsylvania’s campus. The event continues to provide fun for the whole family, even your four-legged friends, and brings together hundreds of people for one universal cause — to support Alzheimer’s and aging-related research at Penn’s Institute on Aging (IOA).

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P.J. Brennan, MD, with his sister, Sheila Connor, at this year’s event.

The 5K for the IOA and the Memory Mile Walk was started in 2012 by the University of Pennsylvania Health System’s Chief Medical Officer and Senior Vice President and IOA External Advisory Board member, P.J. Brennan, MD. After losing his father to Alzheimer’s disease, Dr. Brennan wanted to create a way to get involved in the efforts of finding a cure for this devastating disease. “I wanted to provide support for investigators to test novel ideas that could someday lead to groundbreaking therapies,” he said.

This year, the event raised an impressive $34,245 for the cause and had one of its largest turnouts yet.

As the numbers continue to grow over the years, so do the reasons to attend. In addition to great “SWAG” bags and various raffle prizes, generous awards were given to the top male and female runners in each age category. The overall winners were James Murphy, age 25, with a time of 16:57 and Zandra Walton, age 28, with a  time of 19:19.

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We would like to extend our sincerest gratitude to all of the race organizers, sponsors, volunteers, donors, and participants who make this event a success! Thank you!

The full list of race results, courtesy of Run the Day, can be found here.

To view all of the photos from the event, click here.

To view the 6ABC news coverage of the event, click here.

For more information, visit: www.pennmedicine.org/5kioa

Recognizing MSA: Multiple System Atrophy

What is Multiple System Atrophy (MSA)?

According to the National Institute of Neurological Disorders and Stroke (NINDS), MSA is a “progressive neurodegenerative disorder characterized by a combination of symptoms that affect both the autonomic nervous system (the part of the nervous system that controls involuntary action such as blood pressure or digestion) and movement. The symptoms reflect the progressive loss of function and death of different types of nerve cells in the brain and spinal cord.”

Symptoms may include:

  • Fainting spells
  • Problems with heart rate
  • Bladder control
  • Tremors
  • Loss of muscle coordination
  • Speech problems
  • Gait impairment
  • Rigidity

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Like many other neurodegenerative diseases, some symptoms of MSA can be treated with medications, but there is currently no cure or means of halting progression.

MSA vs. Parkinson’s Disease

While many symptoms can mimic those of Parkinson’s disease (PD), often making it difficult to distinguish a diagnosis in the early stages, MSA typically progresses much more rapidly than PD. Within a few years of initial symptoms, majority of MSA patients will require a cane or walker to aid in getting around.

Moving Towards a Cure

Researchers at Penn, and outside of Penn, continue to work vigorously for answers that will help benefit and improve the lives of those suffering from MSA.

“I would say that, although research in any rare disease is challenging, there have been advances in MSA, from the generation of animal models that are essential to understand the disease and develop new therapies, to several clinical trials that have already been completed in patients with this disorder,” explained Pedro Gonzales-Alegre, MD, PhD, associate professor of Neurology, Division of Movement Disorders at the University of Pennsylvania. “There are also efforts to develop better imaging biomarkers that will help us better diagnose MSA and monitor disease progression of the disease in clinical trials.”

In order to continue in this upward direction, raising awareness, knowledge, and advocacy becomes increasingly important. One of the key players in MSA awareness is CurePSP, a close partner of Penn Medicine. CurePSP is a nonprofit advocacy organization whose mission is to increase the public’s knowledge of prime of life diseases such as progressive supranuclear palsy (PSP), Corticobasal degeneration (CBD), and MSA. They define a prime of life disease as a condition that often strikes during a person’s most productive and rewarding years.

The video below, courtesy of CurePSP, shares the touching story of James Wark, MD, a child neurologist, who is now living with Multiple System Atrophy, and the struggles that he and his family have been faced with since his diagnosis.

 

Multiple System Atrophy Awareness Month

March is Multiple System Atrophy Awareness Month. Show your support on Facebook and Twitter with the banner and message below:

March is #MSAAwarenessMonth! Help spread the word and learn more about #MSA here: http://bit.ly/1LqYaTM

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Corticobasal Degeneration: When it looks, sounds, and acts like Parkinson’s… but it’s not.

What is Corticobasal Degeneration?

Corticobasal degeneration (CBD) is often misdiagnosed as Parkinson’s disease. As defined by the
National Institute of Neurological Disorders and Stroke (NINDS), CBD is a neurological disorder that is characterized by cerebralcortex_basalganglianerve cell loss and shrinkage of multiple areas of the brain including the cerebral cortex and basal ganglia. Much like other neurodegenerative diseases, CBD is progressive, gradually worsening over time.

CBD classically presents itself as a movement disorder, typically affecting one side of the body before the other, but can also impact cognition. Since some symptoms can mirror those of Parkinson’s, one of the most useful signs of Corticobasal degeneration is apraxia. Apraxia refers to an individual’s inability to perform certain movements not because of physical muscle damage, but due to neurological damage.

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Other symptoms include difficulty controlling the muscles of the face and mouth, stiffness, shakiness, and slowness in either the upper or lower extremities, difficulty with speech and articulation, and memory and/or behavioral problems. These symptoms usually occur around the age of 60, although, symptom onset can be as early as 40.

“CBS (corticobasal syndrome) and Parkinson’s disease can clinically be difficult to distinguish but have very different underlying pathologies,” explained David Irwin, MD, Instructor of Neurology, University of Pennsylvania. “Current research efforts are focused on differentiating the underlying diseases (differentiating inclusions formed from alpha-synuclein, tau, amyloid and TDP-43) to help direct promising therapies targeting these proteins.”

While occupational, physical, and speech therapy can help manage CBD, there is currently no cure or treatment to slow the progression of the disease, and most symptoms are generally resistant to possible therapeutic strategies.

You can find more information on CBD at:

National Institute of Neurological Disorders and Stroke

Penn’s Frontotemporal Degeneration Center

CurePSP

The Association for Frontotemporal Degeneration