PDF Team Posters at the 4th World Parkinson Congress

poster_beth_vernaleoAt PDF, our strategy for ending Parkinson’s is to build a team of leaders in research, health care and the patient community and mobilize them to work together toward the cure. That’s one reason we were excited to see 100 members of the PDF team together at the 4th World Parkinson Congress (WPC) in Portland, OR.

One place our team showed their collaborative spirit was in the poster presentations. Throughout the week, the PDF team presented posters sharing advancements in PD research and care.

Many PDF posters, several of which are highlighted below, were authored by teams comprising PD professionals (scientists, doctors, nurses), staff and PDF patient leaders.


poster_jim-beckPrevalence of Parkinson’s in North America: a nationwide epidemiological study sharing available databases
PDF team members: James Beck, Ph.D., Vice President, Scientific Affairs, PDF; Roy Alcalay, M.D., M.S., scientist and clinician at the PDF Research Center at Columbia University Medical Center; Bill Wilson, PDF Research Advocate and person living with Parkinson’s, et al. (See full list on download).

How many people have PD and who are they? These seem like simple questions, but right now the answers are outdated. According to Dr. Beck, finding more accurate answers could help to advance research. This poster discusses how PDF is trying to fix the problem through the Parkinson’s Prevalence Project (P4) which is funding groups of epidemiology experts to find out how many people live with PD. Initial findings? Prevalence may be higher than we think, but may vary across the US. We need research in diverse communities to find accurate numbers. The P4 projects is funding additional research to find out more.
Download this poster here 


poster_katz_lori3The PDF Women and PD Initiative: identifying and addressing unmet needs
PDF team members: Megan Feeney, M.P.H., National Programs Manager, PDF; Veronica Todaro, M.P.H., VP, National Programs, PDF; Lori Katz, PDF Advocate and person living with Parkinson’s; Susan Foster, PDF Advocate and person living with Parkinson’s; Robin Morgan, PDF Advocate and person living with Parkinson’s; and Karen Smith, PDF Advocate and person living with Parkinson’s.

Based on feedback from women in the community, PDF identified many unanswered questions related to women’s experience of living with PD (including symptoms, medical care and support services), but a lack of any coordinated effort to understand them. This poster details PDF efforts to address such issues through the Women & PD Initiative, including a community survey and training of 26 Advocates. Its conclusions? Unexpected interest in the issues, from the media and the community, illustrate a lack of awareness about unmet needs of women with PD and the potential need for and future impact of this program. Not only that, PDF Advocates are now prepared to raise awareness on the local, state and national levels to address women’s needs.
Download this poster here 


poster_jean_macfadyenConstipation and Parkinson’s disease
PDF team members: Jean MacFadyen, Ph.D., R.N., Scholar, The Edmond J. Safra Visiting Nurse Faculty Program at PDF and Gwyn Vernon, M.S.N., R.N., C.R.N.P., National Director, The Edmond J. Safra Visiting Nurse Faculty Program at PDF.

How can people with PD prevent and manage constipation? We have come to understand that constipation is common and often disabling in PD. In fact, it is a topic the community asked PDF to study through our Community Choice Research Awards. In turn, PDF funded an expert roundtable that included nurse specialist Dr. MacFadyen to help find solutions. As Dr. MacFadyen said, “This group identified the need for an educational handout, that would empower patients to manage constipation and its impact on their lives.” Dr. MacFadyen and Ms. Vernon wrote a six-page practical guide for patients. During her poster session, Dr. MacFadyen discussed the under-recognized symptom and raised awareness of this new free educational tool.
Download the Constipation Fact Sheet Here


poster_novak_danLiving well by doing [*]; keeping it interesting
PDF team member: Daniel Novak, Ph.D., Chair, PDF People with Parkinson’s Advisory Council and person living with Parkinson’s.

People ask, ‘what do you do’ in response to PD? Dan Novak’s response is to do something, do anything or do [*] everything. His poster and accompanying slide show demonstrated how people with PD can remain active and do interesting work within and outside of the PD community, e.g., advocate for research, be socially engaged and stay active. In Dr. Novak’s case, this includes boxing, riding a recumbent bicycle and a tandem recumbent bicycle with his wife Tamra, hiking, landscaping, practicing Wii balance games and traveling. Case in point: before and during WPC, Dr. Novak hiked in Colorado, Portland, and joined in a Dallas Mavericks training camp tournament that included basketball practices and two short games — coming in second place.
See Dr. Novak’s bio here


Browse additional PDF Team posters:

Posters from Staff, Patient Leaders and PD professionals

Art as a vehicle to represent the Spanish speaking Parkinson’s community in the Americas
PDF team member: Julio Angulo, Ph.D., Member, PDF People with Parkinson’s Advisory Council

Driving patient engagement in Parkinson’s clinical research: lessons learned in developing successful partnerships with study sponsors
PDF team members: Karlin Schroeder, M.A., Associate Director, National Programs, PDF; Veronica Todaro, M.P.H., Vice President, National Programs, PDF
Download this poster here.

Does gender influence the types of questions asked by people with Parkinson’s?
PDF team members: Christiana Evers, M.P.A., Vice President, Communications, PDF; Linda Pituch, Senior Patient Services Manager, PDF; Jill McClure, Patient Services Manager, PDF; Jeanne Kirby, Information Specialist, PDF; Casey Gallagher, Administrative Assistant, PDF; and Nancy Ralph
Download this poster here

Engaging people with Parkinson’s in determining and defining research priorities: The PDF Community Choice Research Award
PDF team members: Karlin Schroeder, M.A., Associate Director, National Programs, PDF; Beth Vernaleo, Ph.D., Associate Director, Research Programs, PDF; Diane Cook, PDF Research Advocate; James Beck, Ph.D., Vice President, Scientific Affairs, PDF; Veronica Todaro, M.P.H., Vice President, National Programs, PDF
Download this poster here

Hispanics living with PD: perceptions on self-management
PDF team member: Julio Angulo, Ph.D., Member, PDF People with Parkinson’s Advisory Council

Long-term effects of self-efficacy enhancing program for newly-diagnosed persons with Parkinson’s disease
PDF team member: Diane Cook, PDF Research Advocate

Outcomes of the PDF Community Choice Research Award: a workshop to address maintaining cognitive function in Parkinson’s
PDF Team Members: Beth Vernaleo, Ph.D., Associate Director of Research Programs, PDF and Jennifer G. Goldman, M.D., M.S., clinician and researcher, PDF Research Center at Rush University Medical Center
Download this poster here

Parkinson’s Advocates in Research: A Parkinson’s Disease Foundation cutting edge program in patient engagement in research
PDF team members: Karlin Schroeder, M.A., Associate Director, National Programs, PDF; Veronica Todaro, M.P.H., Vice President, National Programs, PDF; Linda Morgan, PDF Research Advocate; and Cliff Ishmael, PDF Research Advocate
Download this poster here.

Posters from Scholars of the Edmond J. Safra Visiting Nurse Faculty Program at PDF

A learning community for nursing faculty: dissemination and the discovery of caring for people living with Parkinson’s disease
Margaret McCormick, M.S., R.N., C.N.E.

An interdisciplinary Parkinson’s disease case study event for dietetics, education, exercise science, health care administration, nursing and social work students: enhancing effective communication between disciplines
Jennifer Bailey Dejong, Ph.D., F.N.P-B.C., C.N.E., R.N.

Assessment and connection to care: the vital role of the social worker in an interdisciplinary home visit program for advanced Parkinson’s disease patients
Sarah Oyler, R.N. and Amy Lemen, M.A., L.C.S.W.

Association of fatigue and sleep problems with retention of daily life activities in people with Parkinson’s disease
Cathi Thomas, R.N., M.S., C.N.R.N.

A successful quality improvement process for improving timely levodopa administration in the hospital
Joan Gardner, R.N., B.S.N.

A targeted web-based approach to support staff nurse learning in the care of Parkinson’s disease patients in acute care settings
Michael Clark, D.N.P., G.N.P., R.N.

Baseline characteristics of a longitudinal study of the social self-management of Parkinson’s disease (SocM-PD)
Cathi Thomas, R.N., M.S., C.N.R.N.

Complementary and alternative medicine (CAM) use in people with Parkinson’s disease (PD)
Ju Young Shin, Ph.D., A.P.N., A.N.P-C.

Conversation mapping as a technique to train student nurses in the care of Parkinson’s disease patients and family members
Marjorie Getz, Ph.D.

Development and testing of a yoga intervention program for subjects with Parkinson’s disease
Corjena Cheung, Ph.D., R.N.

Enhancing care for the hospitalized patient with Parkinson’s disease: development of a formal educational program for nursing staff
Mary DiBartolo, Ph.D., M.B.A., R.N.-B.C.

Enhanced wellness for the Parkinson’s care partner through group support
Amy Lemen, M.A., L.C.S.W.

Feasibility and preliminary outcomes of an interdisciplinary home visit program for patients with advanced Parkinson’s disease
Sarah Oyler, R.N., and Amy Lemen, M.A., L.C.S.W.

From local partnership to national network: the growth of a medically connected, community based Parkinson’s wellness program model
Ruth Hagestuen, R.N., M.A., and Amy Lemen, M.A., L.C.S.W.

From patient to athlete: the development of a novel goal based, interdisciplinary group exercise model for Parkinson’s disease
Amy Lemen, M.A., L.C.S.W.

Hospitalized patients with Parkinson’s disease: using the electronic medical record to reduce medication errors and reinforce staff education at St. Joseph’s Hospital and Medical Center and Barrow Neurological Institute
Edie Simpson, R.N.

Improving nursing education on Parkinson’s disease
Diane Ellis, M.S.N., R.N., and Gwyn Vernon, M.S.N., R.N., C.R.N.P.

Innovative use of mobile health technology in physical therapy for people with Parkinson’s disease
Cathi Thomas, R.N., M.S., C.N.R.N.

LSVT BIG intervention in clients with Parkinson’s disease: a systematic review
Mary DiBartolo, Ph.D., M.B.A., R.N.-B.C.

Medication errors: the role of the nurse in an interdisciplinary home visit program for advanced Parkinson’s disease patients
Sarah Oyler, R.N., and Amy Lemen, M.A., L.C.S.W.

Medication management in women and men with Parkinson’s disease: challenges and strategies
Cathi Thomas, R.N., M.S., C.N.R.N.

Meet Val and Holly: An experiential tour through the lives of a PD family
Laura Kelly, Ph.D., A.P.N., C.N.S., and Cheryl Leiningen, D.N.P., R.N., A.P.N-C.

Motor and non-motor symptoms of Parkinson’s disease by gender and disease duration
Ju Young Shin, Ph.D., A.P.N., A.N.P-C.

Nurse-managed telehealth clinic for Parkinson’s disease: a case series
Carolyn Haines, M.S.N., R.N., F.N.P., A.N.P., Jenny Hughes, M.S.N., R.N., F.N.P., Ingrid Pretzer-Aboff, Ph.D., M.A., R.N., and Susan Cross-Skinner, A.N.P.

Nursing advocacy in assessment of the Parkinson’s patient in acute and outpatient urgent care: impact on health and quality of life
Mary Lou De Natale, Ed.N., R.N., C.N.L.

Parkinson’s Disease: support groups use of PhotoVoice to share experiences
Joyce Bredesen, D.N.P., R.N.

Rechargeable deep brain stimulator (DBS) batteries: exploring possible predictors of patient satisfaction and experience
Monica Volz, R.N., M.S.N.

Redefining social work for Parkinson’s: the development of a new model of care for specialized, comprehensive support in the clinic, community and home
Amy Lemen, M.A., L.C.S.W.

Role of the advanced practice nurse in the management of Parkinson’s disease
Kathleen McCoy, D.N.Sc., A.P.R.N., R.N.

Silver Snowflake Parkinson Fall Prevention Initiative: overview
Klaudia Lewis, M.S.N., R.N., A.P.H.N.-B.C.

Struthers Parkinson’s Center Network (SPCN): improving PD care through growth and development of sustainable partnerships
Joan Gardner, R.N., B.S.N., and Ruth Hagestuen, R.N., M.A.

Telemedicine clinic improves access to mental health care for people with Parkinson’s disease Ingrid Pretzer-Aboff, Ph.D., M.A., R.N.

Tremor: Is it Parkinson’s or something else?
Patricia Cox, D.N.P., M.S.N., R.N.

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