PDF Parkinson’s Advocates in Research (PAIR)

 

A key focus of the Parkinson’s Disease Foundation (PDF) is connecting people with Parkinson’s and care partners with research professionals to help advance research and speed new treatments. The Parkinson's Advocates in Research (PAIR) program has demonstrated that PDF Research Advocates – more than 200 people with Parkinson’s and care partners throughout the country who guide research, address gaps and obstacles, and educate their communities about research – can play an important role in research grants.

 
   

  This fall, a team of PDF Research Advocates in California was instrumental in helping the Parkinson’s Institute and Clinical Center (PI) in Sunnyvale, CA, receive funding to expand their stem cell research program. The PI had applied for a Research Leadership Award from the publicly funded California Institute for Regenerative Medicine (CIRM). The grant would enable the PI to establish their Center for Translational Stem Cell Research and Regenerative Medicine, and focus on work that will lead to a much deeper understanding of Parkinson’s disease and potentially, the development of entirely new treatment strategies.  

 
   
  The founder, chief executive officer and scientific director of the Parkinson’s Institute, Dr. Bill Langston, asked the Parkinson’s Disease Foundation to join PI patients and their families to help organize support for their proposal. CIRM’s governing board, the Independent Citizens' Oversight Committee, was meeting to discuss the proposal, and the PI wanted to demonstrate the support of the California Parkinson’s disease (PD) community for increasing stem cell research in PD. Ten PDF Research Advocates stepped up through writing letters, attending the CIRM meeting and speaking about why approval of the Parkinson’s Institute’s proposal was important to them.  
   
  "In September 2012, the Parkinson’s Institute and Clinical Center was granted a $6.7 million Research Leadership Award from the California Institute for Regenerative Medicine,” Dr. Langston says. “This award will bring Dr. Dennis Steindler, international leader in stem cell research to the Institute in early 2013 to found the Center for Translational Stem Cell Research and Regenerative Medicine. Patient advocacy played a major role in the final review of this grant, and it was inspiring to see the process in action and how powerful passionate advocacy can be. Thanks to Parkinson's Institute patients and their families, PDF Research Advocates and others who testified. Together, we can make a difference."  
   
  PDF Research Advocates are also serving as patient advisors within grants themselves. Dr. Claire Henchcliffe, director of the Parkinson's Institute at the NewYork-Presbyterian Hospital/Weill Cornell Medical Center, reached out to PDF last year about a grant that researchers at Memorial Sloan-Kettering Cancer Center were applying for through New York Stem Cell Science (NYSTEM), a publicly funded program to support stem cell research. The principal investigators, Dr. Lorenz Studer and Dr. Viviane Tabar, were looking for patient advisors for a Parkinson’s study, “Developing a human ES cell derived dopamine neuron source for cell therapy in Parkinson's disease,” that they were hoping to get funded. After contacting PDF, Dr. Henchcliffe, an investigator on the grant, asked PDF Research Advocates Karl Mormer, a person with Parkinson’s from Pennsylvania, and Rhona Johnson, a Connecticut woman whose late husband had Parkinson’s, to serve as patient advocates upon funding of the study.  
   
  Last month, the team was informed that the grant was recommended for funding by the Empire State Stem Cell Board, the group that advises New York’s health commissioner regarding the NYSTEM program.  
   
  “We’ve got a superb team on this proposal, and to get Rhona and Karl involved, with their knowledge, skills, and dedication to the PD community is truly exciting,” Dr. Henchcliffe says. “The perspective of people living with PD is critical to meeting challenges in developing new treatments, and Rhona and Karl will be part of a strong link to the broader community.”  
   

For more information on how PDF Research Advocates can play a role in Parkinson’s research grants at your institution, contact PDF National Programs Director Ronnie Todaro at rtodaro@pdf.org.

 
ENGAGING PATIENTS IN CLINICAL RESEARCH: PDF PARKINSON’S ADVOCATES IN RESEARCH
 
   
Each person involved in PAIR has to complete a three-day PDF training where they often are learning from PSG members – such as Joohi Jimenez-Shahed, M.D. from Baylor College of Medicine (pictured here).  They learn about the science of Parkinson’s and the development of new treatments. "PAIR empowers people with PD and care partners to engage within the research community. Ultimately, these informed grassroots voices, with the support of the scientific and research community, will be the most impactful in effecting change." states Dr. Jimenez-Shahed.    
   

What are these individuals – whom we call PDF Research Advocates – doing to speed new treatments? 

Here are just a few examples of how they could help your work:


 

Guide Research

 

Israel Robledo of Midland, TX, and Cliff Ishmael of Bel Air, MD, are helping to guide research through their involvement with the Patient-Centered Outcomes Research Institute (PCORI) — a federal program that funds research to improve health care. This past spring, Mr. Robledo served as a PCORI grant reviewer, critiquing five projects seeking PCORI funding. His feedback, on the importance of the projects and their involvement of patients, helped to decide whether they received funding. Meanwhile, Mr. Ishmael is advising a team at the University of Maryland, led by Lisa Shulman, M.D., that is planning a study on how to improve care for people with neurological diseases, including PD. The team plans to seek PCORI funding, and has asked for Mr. Ishmael’s expertise to ensure that their study meets the needs of people with PD.

 
   

Fill Gaps and Overcome Obstacles 

 
 

Steve DeWitte of New Preston, CT, is helping to overcome a seemingly simple barrier: getting volunteers to the research studies that interest them.  “When I ask people with Parkinson’s why they are not involved in research studies, many reply, ‘Because I have no transportation.’” His solution was launching the Clinical Trial Transportation Program (CTTP). By partnering with Beth Israel Deaconess Medical Center in Boston, MA, CTTP has helped 26 volunteers to participate in research studies by transporting them by van from Connecticut to Boston. His initiative has inspired fellow PDF Research Advocates Gordie Guist and Cam Weaver to expand the program to Maine.

 
 

Educate Communities

 

PDF Research Advocates Dan and Pat Baker, of Portland, OR, are partnering with Jay Nutt, M.D. at the Oregon Health & Science University (OHSU) to inform their communities about local Parkinson’s disease research studies.  The former educators, who have been married for 42 years and touched by Parkinson’s disease since Dan’s diagnosis in 2002, said of their new role, “We hope that our collaboration with Dr. Nutt and his team is just the beginning of an era in which the community is involved in every step of research and treatment development for Parkinson’s disease.”  Dr. Nutt added, “It will be invaluable for OHSU to have knowledgeable community members join our team of researchers, doctors and other professionals, in order to prioritize Parkinson’s disease research and improve studies.  The presence of the Bakers and their 180 colleague Research Advocates across the country is certainly a crucial step in our goal of finding new treatments for people living with Parkinson’s disease.”

 
   

If you would like to learn more about partnering with PDF Research Advocates, please contact Ronnie Todaro, Director of National Programs, at (800) 457-6676 or rtodaro@pdf.org.