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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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

A Virtual Tour of the Penn Udall Center for Parkinson’s Research

The goals of the Morris K. Udall Parkinson’s Disease Research Center of Excellence, which was launched at the Perelman School of Medicine at the University of Pennsylvania in 2007, are to shed light on the mechanisms of disease progression and alpha-synuclein transmission through collaborations between basic and translational research.

Throughout this virtual tour, you will visit the various researchers and clinicians who have dedicated their lives to fulfilling these goals. As you will see, their mission is to conduct multidisciplinary clinical, translational, and basic research that improves the understanding of and develops better treatments for patients with Parkinson’s disease. These ideas are the driving force behind each of the Cores and Projects listed below that will be highlighted in this tour:

Udall Cores:
Core A: Administrative Core
Core B: Clinical Core
Core D: Neuropathology, Biomarker, and Genetics Core
Core C: Biostatistics, Bioinformatics, and Data Management Core

Udall Projects:
Project I: A Multimodal Biomarker Approach to Evaluating and Predicting Cognitive Decline in Lewy Body Diseases
Project II: Mechanisms of PD Executive Dysfunction in Language
Project III: Mechanisms of Transmission of Pathological Alpha-synuclein in Neurons
Project IV: Immunotherapy Targeting PD Transmission in Animal Models

For more information on the Udall Center on Parkinson’s Research, visit: http://www.med.upenn.edu/udall

Why Partnering for Parkinson’s is a Win-Win!

On Saturday, October 18th the City of Philadelphia hosted Partners in Parkinson’s, a collaborative health initiative of the Michael J. Fox Foundation and AbbVie pharmaceutical, designed to help the Parkinson’s patient and their families navigate the world of Parkinson’s, by better understanding Parkinson’s disease and connecting with medical and community resources to optimize care and enhance patient quality of life. With nearly 500 community members in attendance, Parkinson’s patients and their loved ones learned strategies to optimize Parkinson’s care at every stage of the disease. Whether newly diagnosed or a Parkinson’s veteran, this daylong event proved to be one stop shopping for all, connecting patients with over two dozen local and national partners for Parkinson’s.

Partners in Parkinsons1 Partners in Parkinson's

The morning session kicked off with a moderated patient panel which gave insight into the world of Parkinson’s from the patient perspective. Parkinson’s panelists highlighted common PD symptoms as well as individual challenges in disease management. All panelists emphasized the importance of creating a multi-disciplinary care team including a movement disorders specialist, nurse, speech, physical and occupational therapists and social worker. Penn Medicine’s Lama Chahine, MD., and Parkinson’s patients Beth Ann and Gary Chard demonstrated a typical clinic visit with a movement disorders specialist sharing knowledge of the types of information and supports a person with Parkinson’s can expect. Dr. Chahine highlighted the four components of an appointment with a movement disorders specialist: consultation, neurological examination, non-motor symptom evaluation and caregiver assessment (see photo below). The physician/patient demonstration was well received by participants and quite an eye opener for many, as Dr. Chahine’s thorough evaluation and empathetic approach proved to be on the cutting edge of PD knowledge and resources!

Partners in Parkinson's 3

Research was the next topic to take center stage. Drs. Maurizio Facheris, MD, MSc, Associate Director, Research Programs, The Michael J. Fox Foundation., Daniel Kremens, MD, JD, Associate Professor of Neurology and Co-Director of the Parkinson’s Disease and Movement Disorders Program at Thomas Jefferson University, Lama Chahine, MD, Instructor of Neurology Parkinson’s Disease and Movement Disorders Center, University of Pennsylvania and Meredith Spindler, MD, Clinical Assistant Professor Parkinson’s Disease and Movement Disorders Center, University of Pennsylvania updated the audience on promising PD research to treat, slow and stop the progression of Parkinson’s disease. The all physician panel fielded moderated Q&As about the drug development process, biomarkers, genetic and environmental causes of Parkinson’s disease, the critical need for people with and without PD to participate in clinical trials and general PD related questions. While physician panel discussions gave us a lot to digest, individual break-out sessions:

  • Living Well with Parkinson’s                 
  • Building Connections
  • I’m Still Wondering About…

provided a friendly atmosphere for the Parkinson’s patient to solicit peer support and share ways of taking care of the mind, body and spirit.

As a Penn Medicine resource exhibitor, I had the opportunity to speak with Parkinson’s patients, caregivers and family members about their Partners in Parkinson’s experience and here’s what some had to say:

“I had no idea how much support was out there for me!” Sarah P., York PA

“I’ve participated in Parkinson’s research for years, now my daughter will support me in PD research by joining a clinical trial” Catherine and Karen, Bethlehem, PA

“Although I am happy being followed by my general neurologist, my clinic visit was never as thorough as the (demonstrated) mock visit with the movement disorders specialist. Great job!”

Parkinson’s disease (PD) has affected the lives of more than 1 million American families- and it came without invitation. People with Parkinson’s and their families may not have had a choice in receiving the diagnosis, but they have chosen to live each day with intention and to fully experience each minute of every granted moment. In fact, we can all choose to have the courage to live beautifully, share constantly and love without limits.

Published by: Candace Syres, Outreach Coordinator/Research Assistant, Parkinson’s Disease and Movement Disorders Center, Penn Neuroscience Center at Pennsylvania Hospital

“Like” Penn’s Parkinson’s Disease and Movement Disorder Center on Facebook!
Learn about PD research at Penn’s Udall Center for Parkinson’s Disease Research.

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.