Advocate for Research

All Research Advocates must complete a three-day training program at one of the Foundation’s Learning Institutes. Leading experts from the field teach new advocates about the science of Parkinson’s and new treatment developments, while our patient engagement team provides them with the skills necessary to co-create research.

Training is just the beginning. The entire program works closely with Foundation staff and each other to identify patient engagement opportunities, take part in ongoing education, share resources and network with the research community.

We recommend these trainings to individuals who can commit at least three hours a month to research advocacy work. Find a training below.

The 2023 Learning Institute is open to Black and African American people with PD and care partners from Atlanta (GA), Chicago (IL), New York City (NY), Charlotte (NC) and Alachua County (FL).

The 2023 Learning Institute will focus on training Black and African American Research Advocates. The Foundation is collaborating with leaders in these communities, including Black and African American alumni Research Advocates and research, clinical and support staff at MSM to ensure the Learning Institute is culturally responsive and is led by Black and African American community leaders.

In 2023, the Parkinson’s Foundation is launching an online research advocacy training that is open to anyone. There will also be future in-person Learning Institute opportunities for different communities. Anyone completing any research advocacy training can work with the Foundation as a Research Advocate.

The Parkinson’s Foundation covers all expenses to attend the Learning Institute.

If interested, please contact PatientEngagement@Parkinson.org. Thirty applicants will be accepted due to space limitations. Applicants will be asked to complete a phone interview with the Learning Institute Steering Committee to talk more about their interest and the program.

You will be asked to make a three year commitment to be a Research Advocate in your community. Your activities will be matched to your interests. This may include educating Black and African American communities about research, discussing Parkinson’s Foundation studies, advising research teams on what research is important to the Black and African American PD community and helping scientists design studies.

Please contact PatientEngagement@Parkinson.org to discuss ways to get involved. We are happy to discuss the many other ways you can collaborate with the Foundation on patient engagement in research and work in Black and African American communities.

Check our sample curriculum from a previous Learning Institute training session. Sessions are normally moderated and facilitated by regional leaders in Parkinson's research and other Parkinson’s Foundation Advocates. Read now.

Prioritizing Research

“By helping decide what research should take priority, I can ensure studies reflect the needs of people with Parkinson's.”
-Ron Wincek, Parkinson’s Foundation Research Advocate, Patient Representative at the Foundation’s Community Choice Research Award Conference on Gastrointestinal Function, Lawrenceville, GA

Improving Studies

“As an associate member of a national PD research consortium, I share the perspective of people with Parkinson's with research professionals. My goal is to provide suggestions on making study participation an easy and clear process, boost study recruitment and emphasize issues important to people with Parkinson's.”
-Becky Houde, Parkinson’s Foundation Research Advocate, Associate Member, Parkinson Study Group, Waltham, MA

Influencing stakeholders

“This is a hard disease because there is no cure. The only way we are going to speed the pace of drug development is by getting involved in research. Clinical trials sorely need people with PD and those without it. As Parkinson’s Foundation Research Advocates, my husband Al and I bring this critical message to support groups, health professionals and students in diverse communities."
-Jane Denmark, Parkinson’s Foundation Research Advocate, Bay Minette, AL

Attending the Learning Institute

"I found my involvement within the Parkinson's community took off exponentially as a result of the Learning Institute. It opened numerous doors and introduced me to people with Parkinson’s, care partners and scientists that I now consider lifelong friends. I cope with this disease by keeping myself involved, by trying to make a difference and find a cure faster. The Learning Institute gave me the edge to be involved on a national level —it's clear that the research community recognizes the expertise of those who are trained through the Learning Institute. We are being heard as expert voices in the PD community! Thank you, Parkinson’s Foundation."
- Linda Morgan, RPh, MBA, Asheville, NC

"My wife (who lives with Parkinson's) and I learned a lot about Parkinson's disease, its treatment, and clinical research during the Learning Institute. It also opened the door for my appointment to the FDA's Peripheral & Central Nervous System Drugs Advisory Committee, where I will be directly involved in the approval process for new PD drugs."
- Rich Hoffman, Pharm.D., Hernando, FL

People with Parkinson's disease (PD) and care partners who live in the U.S. (including Puerto Rico) can apply. You may apply individually or as a team. The team must be a person with Parkinson's and a care partner.

We look for people who have a common interest in Parkinson's research. Our goal is to have people from different background with different experiences. We look for people who want to learn how to educate their community about research and work with researchers.

No. We accept Research Advocates with a range of knowledge. Some people come to the training who are new to research. Some people come to the training who are people with Parkinson’s who happened to work as researchers.

You can think about how you would like to be involved in research. For example, do you want to educate your community? Do you want to work with a researcher to design a study? If you have participated in research, let us know.

You may submit a resume, information about work or volunteer experience and references if you would like to do so. However, a resume and references are not required to apply. You can save the application and come back to it later if you need to think about something.

We will cover all training expenses for you (registration, travel, hotel, accommodation and meals).

At the training, you will learn how you can play a part in research. Courses include current research in PD, how research works and how to work with researchers and your community.

Researchers, current Research Advocates and Parkinson’s Foundation staff members teach courses. Guest speakers come from places like the Food and Drug Administration (FDA) to tell you how you can play a part in their organization.

Research Advocates work with researchers and their communities in many ways. Some examples include:

• They educate their communities about research.
• They talk to researchers about research priorities.
• They also improve studies be making sure it is easy for people to participate.
• Finally, they work with organizations like FDA to influence how research is done.

Research Advocates spend a minimum of three hours per month activities. This includes a monthly one-hour conference call to tell us about your activities. This helps us track our success. It also includes any projects you are working on.

Yes. The training is just the beginning. You will get one-on-one support with your work. We will help you make connections to researchers and work on projects. We also hold monthly conference calls to keep you up to date on research and develop new skills.

Take part in the Parkinson’s Foundation’s Research Advocates online course, where you will learn more about clinical research and research advocacy.