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.

Advertisements

CNDR’s 14th Annual Marian S. Ware Research Retreat” “Biomarkers in Neurodegenerative Diseases”

100_0131

On Friday, October 3, 2014, Penn’s Center for Neurodegenerative Disease Research (CNDR) hosted their 14th Annual Marian S. Ware Research Retreat which focused on the theme “Biomarkers in Neurodegenerative Diseases.” To discuss this topic, CNDR welcomed a variety of experts in drug development, Alzheimer’s disease, Parkinson’s disease, Frontotemporal Degeneration (FTD) and other neurodegenerative diseases to showcase how biomarkers are currently being used, or can be used, in their field of research. Speakers included Penn affiliates, Jon Toledo, MD, Research Associate, CNDR, Les Shaw, PhD, Director, Biomarker Research Laboratory, Corey McMillan, PhD, Research Assistant Professor, Penn’s FTD Center, David J. Irwin, MD, Instructor in Neurology, Penn’s CNDR and FTD Centers, Rizwan Akhtar, MD, PhD, Clinical Instructor, Department of Neurology, and Alice Chen-Plotkin, MD, Assistant Professor, Department of Neurology, as well as Mark Mintun, MD, President and Chief Medical Officer of Avid Radiopharmaceuticals, Inc., a close partner of CNDR. See agenda for talk titles.

This slideshow requires JavaScript.

In addition to the lectures, this daylong event also included a poster session highlighting recent and current projects submitted by Penn affiliates and other various colleagues. Following the last set of lectures, first, second, and third place winners were chosen for the Best Poster Awards.

1st  P L A C E   W I N N E R
100_0145Poster Title: “A directed genetic screen reveals loss of rad-23 as a suppressor of neurodegeneration”
Presented By: Angela Jablonski
Authors: Jablonski AM1, Lamitina T4, Liachko NF5, Liu J6, Mojsilovic-Petrovic J2, Kraemer B5, Wang J6, and Kalb1,2,3
Affiliations: Department of Neuroscience1, Department of Pediatrics, Division of Neurology, CHOP2, Department of Neurology3, Department of Pediatrics and Cell Biology, University of Pittsburg Medical Center4, Geriatric Research Education and Clinical Center, VA Puget Sound Health Care System, University of Washington5, Department of Biochemistry and Molecular Biology, John’s Hopkins School of Medicine6

 

2nd  P L A C E   W I N N E R
100_0144Poster Title: “Optineurin is an Autophagy Receptor for Damaged Mitochondria in Parkin-dependent Mitophagy that is disrupted by an ALS-linked mutation.”
Presented By: Yvette Wong
Authors: Yvette C. Wong, Erika L. Holzbaur
Affiliation: Department of Physiology

 

 

 

3rd  P L A C E   W I N N E R
100_0143Poster Title: “Molecular mechanisms of hnRNPA1 and hnRNPA2 misfolding and toxicity”
Presented by: Alice Ford
Authors: Alice Ford1, Lin Guo2, Emily Scarborough2, James Shorter2
Affiliations: Neuroscience Graduate Group, Department of Biochemistry and Biophysics1, Department of Biochemistry and Biophysics2

 

 

CNDRRetreatOpeningSlideAgendaJPEG

A Vision to Build a Culture of Health

Last month, the Institute on Aging co-sponsored ‘A Vision to Build a Culture of Health’, a Penn Center for Public Health Initiatives (CPHI) Seminar Series event. We were especially excited to welcome the guest speaker, Dr. Risa Lavizzo-Mourey, MD, MBA, former IOA Director, back to Penn’s campus to bring attention to such an important topic – improving the health of our nation as a whole.

Dr. Lavizzo-Mourey, President and CEO of the Robert Wood Johnson Foundation (RWJF), the nations largest philanthropy dedicated to health and health care, focused her lecture on how we as a nation must come together in order to build a ‘Culture of Health.’ “Health is more than simply not being sick,” explained Dr. Lavizzo-Mourey, a devoted advocate for reversing childhood obesity, creating a health care system to provide the best care at a reasonable cost, and addressing the various social factors (where you live, level of education, access to healthy foods, etc.) that impact health. She stressed that society needs to embrace the idea that promoting health is just as important as treating disease.

According to Dr. Lavizzo-Mourey, she believes that making the necessary changes towards building a Culture of Health in America is absolutely possible, but we must demand the change. She compared the concept to the evolution of recycling. Once the idea was formed, accepted, and enforced, it quickly became second nature because it was made easy. With the use of specifically labeled bins, it takes little to no effort to recycle. It was a necessary change to improve our environment and so it became a priority. If we can form the same mindset about the steps that we need to take to improve the health of the nation, they, too, will become second nature.

“Lets make shifting to health our next big idea!”

Dr. Lavizzo-Mourey explained that through their ‘Culture of Health Prize,’ she and her colleagues at RWJF highlight and honor communities that are embracing the important need for local change to make health their top priority. The selected communities are awarded for “leading some of the nation’s most innovative efforts to build a Culture of Health”, through their unique efforts to promote active lifestyles, expand educational opportunities, and address localized factors that impact the communities health. Learn more here.

This slideshow requires JavaScript.

The lecture concluded with a brief Q&A, followed by a lunch reception and the Culture of Health Showcase. The showcase displayed poster submissions from those who are also helping to build a Culture of Health through their work including research, teaching and mentoring, community engagement, policy development, and more.

For more information on the Robert Wood Johnson Foundation, visit: http://www.rwjf.org

For more information on the Penn CPHI and their future Seminar Series events, visit: http://www.cphi.upenn.edu