Leadership Forum Agenda
Share |

WPC Leadership Forum 2016: Building a global Parkinson’s community

Monday, September 19, 2016 in Portland, Oregon

Download agenda 

Target audience: Leaders from Parkinson’s organizations globally alongside secondary associations that serve the Parkinson’s community (rehabilitations specialists, movement disorder society, movement disorder clinics, etc.)

Goal: Designed to start a conversation around how we can more effectively collaborate while setting the stage for a global effort to raise awareness around PD and improve care for people living with PD. 


EMCEES: Steve Ford (UK) and Maria Barretto, PhD (India), WPC 2016 Organizations Committee Co-Chairs


7:30AM - 8AM – Check In


8AM – 8:30AM Coffee, light breakfast, hang & view posters, meet & greet, networking,


8:30AM –Welcome comments from Eli Pollard, WPC Executive Director (USA)


8:35AM – Emcees - Why collaboration and networking is so crucial to good care and how we can learn from each other to improve the Parkinson’s situation for people globally.  Taking a closer look at the importance of outreach in emerging and developed countries, to niche communities dealing with language, economic and geographic barriers.


8:55AM – 10:30AM – Session I – OUTREACH



Marcus Cranston, MD (USA)

10 minutes

Maria Barretto, PhD (India)—Reaching the Unreached: Challenges and Triumphs

15 minutes

Claudia Martinez (USA) & Leslie Chambers (USA)—Outreach to Spanish community: Different models and solutions from the MAPC and the APDA

10 minutes

Sara Lew (Malaysia) – Reaching the Malaysia community

10 minutes

Njideka Okubadejo, MBCHB, FMCP (Nigeria)—Making access to medicines a priority issue in Nigeria

10 minutes

Hellen Mwithiga (Kenya)—Demystifying Parkinson’s disease in isolated communities in Kenya

Q&A Moderator:

Robin Elliott (USA)

10:30AM – 10:45AM
– Break


10:45AM – 11:30AM (45 minute round table talks)

Roundtables (each seats up to max 10 people + host(s))

Hosts are asked to prepare simple write up beforehand, which will be shared with all participants. Participants will, based on their interest, choose their three or four preferred topics. We will assign them tables.  Hosts are to prepare posters ahead of time, that are more detailed than the short summaries, to be displayed in room. People can review posters in the morning, before we get started or during breaks over the course of the day. Based on these posters, people will be asked to choose their preferred roundtable topic.


#1: Creating a communication tool for clinical researchers and participants in clinical trials: The Clinical Trials Charter. What it means and how you can implement it or use it within your own organization.
Host: Jon Stamford (UK) Cure Parkinson Trust

#2: Optimizing recruitment for clinical trials. What is means and how you can implement it or use this information for your own organization?
Pinky Agarwal, MD (USA) Booth Gardner Parkinson Center, Seattle, WA

#3: Patients as dancers: fostering collaborations between the Parkinson’s community and professional dance organizations around the globe.  What is means and how you can implement it or use this information to get a program like this off the ground for your own organization.
Host: David Leventhal (USA), Co-founder, Dance for Parkinson’s

#4: The compassionate “No”: sustainability when leading a Parkinson’s organization.
Explore how to develop and implement a vision for service, excel at saying “no” in a way that keeps the members close, but helps them understand the need for strong focus to offer sustainable service.
Host: Jared Cohen (USA) Parkinson Foundation of the National Capital Area


#5A: Spanish outreach efforts and successes in the USA
Claudia Martinez, MD (USA) Muhammad Ali Parkinson Center


#5B: Spanish outreach efforts and successes in the USA
Host: Leslie Chambers (USA) & Rosa 
Peña (USA) American Parkinson Disease Association


#6: Training the trainers: How to develop community resources through training and engagement in populations with minimal or no access to medical care and treatment.
Maria Barretto, PhD (India) Parkinson & Movement Disorder Society


#7: Could every doctor be a Parkinson’s expert?
Peter Schmidt (USA), National Parkinson Foundation


#8: EPDA Parkinson’s Life online magazine: building communities online and Lessons learned
Co-Host: Dom Graham (UK) European Parkinson Disease Association


#9: Pay It Forward:  Creating a donation-based funding model where no patient is denied therapy services based on insurance or financial limitations. 
Host: Samantha Elandary, MA, (USA) Parkinson Voice Project


#10: Fundraising in the nonprofit world of Parkinson’s: Tips on how to step up your game
Paul Jackson-Clark (UK) Parkinson’s UK


#11: Access and Awareness in Emerging Countries
Co-Hosts: Njideka Okubadejo, MBCHB, FMCP (Nigeria) & Hellen Mwithiga (Kenya)


(11:30 – 12:15PM – REPEAT of ROUNDTABLES)

12:15PM – 1:15PM LUNCH

Over lunch, participants eat, network, and view the posters before starting back at 1:30PM.

1:30PM to 1:50PM

Oscar Gershanik, International Parkinson & Movement Disorder Society President (Argentina)

How IPMDS aims to serve the world and envisions collaboration with the advocacy community.


1:50PM to 2:15 PM – Bringing forward the day when no one fears Parkinson’s
Steve Ford (UK)
Setting the stage for the afternoon talks focused on collaboration and expanding the opportunities to collect input from a broader section of stakeholders than traditionally employed.



Malcolm Irving (Australia) How can expanding the training programs to include more stakeholders impact the treatment patients receive and raise awareness of the disease? What’s the evidence and can these ideas be implemented in other communities?

12 mins + 3 min Q&A

Parkinson Community Educators
Presenter: Deirdre O’Sullivan (New Zealand) Parkinson’s New Zealand

12 mins + 3 min Q&A

Nurse Educators: Training the Nursing Faculty to increase care for people with PD
Presenter: Gwyn Vernon, RN (USA) Edmond J. Safra Philanthropic Foundation Visiting Nurse Faculty Program

12 mins + 3 min Q&A

People with Parkinson’s: Lessons Learned in Building Collaborations
Presenter: Ronnie Todaro, MPH (USA) Parkinson’s Disease Foundation

12 mins + 3 min Q&A

Medical Students: Buddies Program
Presenter: Erika Branch (USA) Parkinson Support Center of Kentuckiana

20 - 25 mins + Q&A

Q&A Moderator: Robin Elliott (USA)

3:50 – 4:15 PM BREAK


4:15PM – 5PM Creating an international community: Learning from each other
Facilitators: Steve Ford and Maria Barretto, PhD

Membership Software Powered by YourMembership.com®  ::  Legal