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.

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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!

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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.

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

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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.

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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

 

 

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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.

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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

Meaningful Steps to Healthy Brain Aging

As people are living longer, the idea of maintaining and improving cognitive health is becoming more and more important. “The rates or chronic disabilities among people over age 65 have been decreasing for decades,” but the rates of older adults developing aging-related diseases such as Alzheimer’s, Parkinson’s, and other dementias and movement disorders will continue to climb. While our genetics certainly play a role in how we age, they are not a defining factor. There are many meaningful ways in which we can move towards a healthy brain lifestyle to help reduce or delay the affects of age-related changes in cognition and function… and it is never too late to start.

  • Exercise: Our executive functions, “the command and control operations of the brain which help us plan our daily lives”, are most improved by exercise. Combination routines such as biking, swimming, or brisk walking plus strength training or weight baring exercises for as little as 30 minutes a day, 3-4 days a week enough so that we break out into a sweat is believed to reduce our risks for cognitive impairment as we age.
  • Diet: A heart-healthy diet is a brain healthy diet. Choosing food options such as fresh vegetables, fresh fruits, lean proteins like fish and poultry, beans and whole grains and avoiding saturated fats found in red meats, butter, and oils will help maintain both heart and brain health.
  • Social Engagement: Staying socially active and engaging with others also reduces our likelihood of developing cognitive impairment as we age.
  • Cognitively Stimulating Activities: Spending your free time reading the newspaper, doing a puzzle, or playing thought-provoking games such as cards or Sudoku rather than mindless activities like watching television helps to stimulate your mind and reduce your risk for issues with cognition.

With that said, there is another important piece to the puzzle of healthy brain aging. There is a growing need for advances in drug discovery in order to accelerate new therapies and combat the affects of aging-related cognitive changes. We have the ideas, we have the people, and we have the resources but it is up to us to prioritize them if we want to eliminate the devastating dementias and movement disorders that affect the aging community and have an impact on healthy brain aging.

For more tips on healthy brain aging, check out “Brain Health As You Age: You Can Make A Difference!”, a brain health resource developed by the National Institutes of Health (NIH), the Administration for Community Living (ACL), and the Centers for Disease Control and Prevention (CDC).

Penn Medicine’s Third Annual 5K FOR THE IOA & The Memory Mile Walk

For the third year in a row, Penn Medicine’s 5K for the IOA and The Memory Mile Walk on Sunday, September 21st, went off without a hitch! In the final stretch of summer, humidity clung to the air as nearly 300 runners and walkers prepared for their trek across Penn Park.

WebAccompanied by the beautiful skyline views of Center City and the encouraging cheers of volunteers stationed along the route, runners ranging in age from 7-74 made their way up several hills, over bridges and around the various athletic fields throughout the park. The first runner to cross the finish line did so in an impressive 16 minutes and 42 seconds. With such a broad age range of participants, awards were given to the top three male and female finishers in each age group. The full list of race results, courtesy of Run The Day, is available here.

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First time runner, Nicolette Patete, Digital Media Specialist for the IOA who helped promote the event, shared her experience of the 5K with us below.

_DB14610-3552630527-O copy “It was definitely more challenging than I had expected – especially the hills – but I finished in less time than I thought I would. I wish I had spent as much time preparing for my run as I did promoting it! I didn’t run the entire 3.1 miles, I took a few breaks to walk for a minute or so, but each time I did there was a volunteer on the sidelines encouraging me to keep moving. Seeing familiar faces of some of my Penn peers that I work with, along the route and in the race, was definitely motivating. There were also two young girls – probably around 7-8 years old – who passed me a few times, so I used them for some inspiration. It was really awesome to see them so determined. Overall, as hard as it was, I did have a good time. A 5k is a piece of cake for some, but since it was my first race ever, I felt really accomplished. I was really proud to support such a good cause and it was so nice to see so many other people come together for the same reason. I definitely plan on doing it again next year and trying to beat my time… but I might have to start training now!”

Proceeds from the event support Alzheimer’s and aging-related research and care at the Institute on Aging. Some registrants came out to honor loved ones suffering from aging-related diseases while others simply came to support a great cause.

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Thank you again to all of our runners, volunteers, supporters, and sponsors for making our third time around another great success!

View more photos from the 5K for the IOA & The Memory Mile walk here!

Photo credit: Daniel Burke Photography

A Visit from the PA House and Senate Aging Committees

Yesterday, the Pennsylvania House of Representative’s Aging and Older Adult Services Committee and the Pennsylvania Senate’s Aging and Youth Committee joined us here at the University of Pennsylvania for a Site Visit of Penn’s Institute on Aging (IOA), Center for Neurodegenerative Disease Research (CNDR), and School of Nursing. The goal of the site visit was not only to inform the Aging Committee about the unique work being done here at Penn to benefit the aging community of Pennsylvania, but also to help them better understand the important need for additional funding towards aging-related research and care, how it can improve upon the current efforts that are already in place, and how it can make future research plans possible.

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The day started with presentations by select representatives from each center and school. Topics included the mission of the IOA and its goal to collaborate with all schools across Penn’s campus, the Penn School of Nursing’s various programs and studies that are conducted on a variety of aging-related issues and therapies, and how different centers within the Perelman School of Medicine such as CNDR, the Udall Center for Parkinson’s Research, Penn’s Alzheimer’s Disease Core Center (ADCC)/Penn Memory Center, and Penn’s FTD (Frontotemporal Degeneration) Center are all working towards combatting the devastating neurodegenerative diseases that most commonly affect the aging community.

More specifically, Penn School of Nursing representative Kathryn H. Bowles, Ph, RN, FAAN, discussed their music therapy program that was developed to help dementia patients regain speech and vocal abilities as well as a program dedicated to helping caregivers better understand why they may witness symptoms of apathy in patients, which is often difficult to comprehend. They are also conducting a study focused on understanding what triggers “fear of falling” in the elderly as well as a unique hospital discharge model to help with decision making on whether or not continued care, such as home care, is in the patients best interest which can lower the rate of readmission.

Dawn Mechanic-Hamilton, Director of Penn Memory Center’s Cognitive Fitness Program also joined us as a presenter. She explained how this program assists those who have been clinically diagnosed with mild cognitive impairment (MCI) as well as those who personally feel that they are experiencing memory decline to strengthen and/or maintain their cognitive health. The program consists of an 8-week course of two three-hour classes a week that “combine facilitator-led computer-based brain stimulation exercises, compensatory strategies, relaxation education, and supportive coaching” (pennadc.org).

Following several other presentations that focused on the scientific research of detection, treatment, and drug discovery for a variety of neurodegenerative diseases being done at Penn’s CNDR, Udall Center (PD), FTD Center, and ADCC, the members of both committees were led on a tour of the CNDR lab by the director of Drug Discovery at CNDR, Kurt Brunden, PhD. They were able to witness hands-on research of bio samples as well as getting a look at the center’s brain bank where they were able to compare and see for themselves the physical differences between a healthy brain and an Alzheimer’s brain.

The Site Visit concluded with an open discussion on the ways in which the PA House of Representative’s Aging & Older Adult Services committee, the PA Senate’s Aging and Youth committee, and the Penn affiliates can all move forward in their mutual goal of improving the lives of the aging community in Pennsylvania.

CNDR Trains the Next Generation!

Get a look inside CNDR’s Summer Student Internship programHear from CNDR Director, Virginia M.-Y. Lee, PhD, MBA, as well as students and mentors on the importance of this program and how it is paving the way for future scientists and researchers.

One of the Institute on Aging’s closest partners is the Center for Neurodegenerative Disease Research (CNDR) at the University of Pennsylvania. Directed by Virginia M.-Y. Lee, PhD, MBA and Co-Directed by IOA Director, John Q. Trojanowski, MD, PhD, CNDR works to bring together researchers investigating the causes and mechanisms of neurodegenerative diseases that occur most frequently with advancing age such as Alzheimer’s disease, Parkinson’s disease, Amyotrophic Lateral Sclerosis (ALS), Frontotemporal Lobar Degeneration (FTD), and more.

It is their goal to find ways to better diagnose and treat these disorders all while providing top-notch training to the next generation of researchers. One way that they do this is through their Summer Student Internship program. This program brings in high school and college level students to work hands-on alongside the CNDR team in their various labs. Throughout this summer program, students are trained by the dedicated research specialists at CNDR, given the opportunity to experience and contribute to real-world research, and gain the confidence that they too can help make a difference in combatting the devastating neurodegenerative diseases that affect the lives of so many patients and their families.

To learn more about the Center for Neurodegenerative Disease Research, visit: www.med.upenn.edu/cndr