You Too Can “PAIR Up” For Parkinson’s Research!
Partner with an Advocate
Are you a doctor, research professional or support group leader? You can benefit from working with one of PDF’s Research Advocates. They are prepared to review clinical study protocols, assist with developing clinical trial recruitment plans and speak to support groups about getting involved in local research opportunities. Contact us to connect with a Research Advocate in your community.
Take our Online Course
All PDF Research Advocates have completed in-person trainings and commit at least five hours a month to research advocacy work. If that's not an option for you, but you want to get involved, take PDF's four-part online course. You will then have the opportunity to work with PDF Research Advocates and staff to advance Parkinson's research in your community.
Do you want to know more about Parkinson's? PDF's materials provide information about symptoms, medications, resources & more.
180 PDF Research Advocates Work to Speed New Treatments
Since PDF’s Parkinson’s Advocates in Research (PAIR) program was created in 2008, this program — which prepares lay leaders to play advocacy roles in research — has graduated a total of 180 educated individuals through its in-person trainings. The program is also providing an expanded list of ways in which aspiring volunteers can take part. Find out more about how Research Advocates advance research and help to speed new treatments.
They 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.
They 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. As he told News & Review, “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.
They Educate Communities
PDF Research Advocate Bernie Snead of Myrtle Beach, SC, believes that one of the simplest ways to advance research is to let the community know what they can do to help. And one key place for sharing the information is support groups. In collaboration with the Parkinson Association of the Carolinas, Mr. Snead aims to bring the latest information to 46 support groups in North and South Carolina. To date, he has reached 13 of them. He interweaves PDF’s Getting Involved in Parkinson’s Research presentation with his own personal experiences in volunteering for trials. He tells groups about the studies that are taking place in their communities, and suggests questions that people should ask when they are thinking about volunteering. Following his presentations, the number of support group members who stated that they are likely to participate in a clinical trial increased by 50 percent!