## Breadcrumb - [Home](/) - [Advancing Research](/advancing-research) ## Breadcrumb - [Home](/) - [Advancing Research](/advancing-research) # Advocate for Research Help us make Parkinson's research more efficient and effective. ![Group of researchers shaking hands](/sites/default/files/styles/1902x600/public/images/advocateforresearch.jpg?h=649f25c7&itok=BFx2VR13) IN THIS SECTIONIN THIS SECTION - [Understanding Parkinson’s](/understanding-parkinsons) View Menu - [Understanding Parkinson’s](/understanding-parkinsons) - [What is Parkinson's?](/understanding-parkinsons/what-is-parkinsons) - [10 Early Signs](/understanding-parkinsons/10-early-signs) - [Causes](/understanding-parkinsons/causes) - [Movement Symptoms](/understanding-parkinsons/movement-symptoms) - [Non-Movement Symptoms](/understanding-parkinsons/non-movement-symptoms) - [Getting Diagnosed](/understanding-parkinsons/getting-diagnosed) - [Statistics](/understanding-parkinsons/statistics) - [Living with Parkinson’s](/living-with-parkinsons) View Menu - [Living With Parkinson’s](/living-with-parkinsons) - [New to Parkinson's](/living-with-parkinsons/new-to-parkinsons) - [Our Care Programs](/living-with-parkinsons/care-programs) - [Finding Care](/living-with-parkinsons/finding-care) - [Treatment](/living-with-parkinsons/treatment) - [Management & Lifestyle](/living-with-parkinsons/management) - [Emotional & Mental Health](/living-with-parkinsons/emotional-mental-health) - [Legal, Financial & Insurance](/living-with-parkinsons/legal-financial) - [My PD Story](/living-with-parkinsons/stories) - [Resources & Support](/resources-support) View Menu - [Resources & Support](/resources-support) - [Helpline](/resources-support/helpline) - [In Your Area](/your-area) - [PD Library](/resources-support/pd-library) - [Hospital Safety Guide](/resources-support/hospital-safety-guide) - [Online Education](/resources-support/online-education) - [Events](/resources-support/events) - [Community Grants](/resources-support/community-grants) - [For Care Partners](/resources-support/carepartners) - [For Professionals](/resources-support/professionals) - [Find Your Chapter](/resources-support/find-your-chapter) - [Blog](/resources-support/blog) - [Advancing Research](/advancing-research) View Menu - [Advancing Research](/advancing-research) - [Finding A Cure](/advancing-research/finding-cure) - [Our Research](/advancing-research/our-research) - [Understanding Research](/advancing-research/understanding-research) - [Join A Study](/advancing-research/join-study) - [Advocate for Research](/advancing-research/advocate-research) - [For Researchers](/advancing-research/for-researchers) - [Drug Discovery and Development](/advancing-research/parkinsons-drug-discovery) - [How You Can Help](/how-to-help) View Menu - [How You Can Help](/how-to-help) - [Donate Now](/how-to-help/donate) - [Why Support Us](/how-to-help/why-support-us) - [Make a Tribute Gift](/how-to-help/tribute) - [Fundraise](/how-to-help/fundraise) - [Volunteer](/how-to-help/volunteer) - [Corporate Sponsors](/how-to-help/corporate-sponsors) - [Planned Giving](/how-to-help/more-ways-to-give/planned-giving) - [More Ways to Give](/how-to-help/more-ways-to-give) - [Policy & Advocacy](/how-to-help/policy-advocacy-priorities) ## 💡 Quick Summary - The Parkinson’s Foundation Research Advocates program trains people with Parkinson’s and [care partners](/resources-support/carepartners "For Care Partners") to partner with scientists and improve how PD research is designed and conducted. - Advocates help prioritize research needs, make studies more practical and patient-centered and educate their communities about participating in Parkinson’s research. - Anyone with PD or a care partner can apply by completing Foundation-led training. **Parkinson's Foundation Research Advocates** ensure more efficient and effective research when it comes to Parkinson’s disease (PD). We pair people with PD and caregivers as primary research partners with scientists, industry and government. ## Research Advocates Main Objectives Research Advocates change research through: - Prioritizing research - Improving studies - Influencing stakeholders Despite promising research, there is neither a cure for Parkinson's nor medications that can reverse its course. But there can be. We can make research more efficient and effective by ensuring that people with Parkinson's and care partners are primary partners in research alongside scientists, industry and government. Our signature national patient engagement in research program, Parkinson's Foundation Research Advocates (formerly known as PAIR), makes this partnership a reality by bringing together the people who live with Parkinson's and the people developing new treatments. Research advocates also work in their communities, raising awareness and educating others on the importance of participating in Parkinson’s research. ![Infographic about advocating research and drug development](/sites/default/files/styles/no_sizing/public/images/advocateforresearchinfographic.png?itok=SCNhDnss) ### How to Become a Research Advocate The Parkinson’s Foundation has trained more than 400 people with PD and care partners as Research Advocates since 2008. To become a research advocate: 1. People with Parkinson’s and care partners must connect with the patient engagement team to become a Research Advocate. We are looking for people with an interest in research and a willingness to work with researchers on a variety of projects. 2. Once selected, Research Advocates undergo trainings, where our patient engagement team provides them with the knowledge and skills necessary to pair up with scientists and health professionals. The trainings can be in person by attending one of the Foundation’s Research Advocacy Workshops (formerly known as the Learning Institute) or by completing our online course. 3. Next, our team will help facilitate partnerships between Research Advocates and professionals at the front lines of research at academic institutions, industry, and government. - ### Required Training All Research Advocates must complete either an in-person training program at one of the Foundation’s Research Advocacy Workshops (formerly known as the Learning Institute) or complete our Research Advocacy online course. 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. - ### Research Advocates in Action 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. ## Training and Locations Thank you for your interest in volunteering as a Research Advocate. The first step is to complete the Parkinson’s Foundation Volunteer Orientation. You can register for the orientation by visiting our [Volunteer Orientation](https://www.parkinson.org/VolunteerOrientation) page. The Foundation offers training to become a research advocate through in-person training and an online course. Please see details regarding training options below. **Research Advocacy Workshop (formerly known as the Learning Institute)** This training is an in-person, intensive one-and-a-half-day course that covers the research process. It prepares Research Advocates, by empowering them with tools and knowledge, to educate their communities about research and work with research teams to design and implement studies. The Foundation may set certain criteria based on geographic locations in order to reach certain communities. The Foundation may also redesign the Research Advocacy Workshop to engage [populations of focus](https://www.parkinson.org/about-us/vision-mission/diversity-equity-inclusion). **Research Advocacy Online Course** The online course is self-paced and can be completed as your schedule allows. It is open to people with Parkinson's and care partners that live in the U.S. If you would like more information about the Research Advocacy Workshop or online course, please email . ## [ Contact Us ](< mailto:patientengagement@parkinson.org >) Learn more about the program. [ ![Envelope icon](/themes/custom/parkinson/assets/images/envelope.svg) PatientEngagement@Parkinson.org ](mailto:PatientEngagement@Parkinson.org) [ ![Phone icon](/themes/custom/parkinson/assets/images//phone.svg) 1-800-4PD-INFO (473-4636) ]() ## Research Advocacy Workshop (formerly known as the Learning Institute) The Research Advocacy Workshop is a Parkinson’s Foundation training for people with Parkinson’s and care partners who would like to serve as Research Advocates. This program is an educational and interactive course in the research process. It will prepare participants to educate their communities about research and work with research teams to design and implement studies. Leading Parkinson’s experts teach Research Advocates the science of PD research and explore the process of developing new treatments. Parkinson’s Foundation staff, international thought leaders in patient engagement in research, teach Research Advocates the skills needed to collaborate with teams at the front lines of research. **When and where is the next Research Advocacy Workshop?** For more information, please email . Remember, you can complete the online course in research advocacy if we have not yet announced the next in-person training. Completing the online course does not exclude you from participating in an in-person Research Advocacy Workshop. - ### Who can attend the Research Advocacy Workshop? The Research Advocacy Workshop, formerly known as the Learning Institute, is an in-person training open to people with Parkinson’s and care partners. - ### What is the cost to attend? All expenses to attend the Research Advocacy Workshop are paid by the Foundation. Hotel and meal accommodations will be provided, travel will be reimbursed. - ### How do I sign up? If interested, please contact . Thirty applicants will be accepted due to space limitations. Applicants will be asked to complete a video/phone call with the patient engagement team and Research Advocacy Workshop Planning Committee to talk more about their interest and the program. - ### What will be expected of me after I attend the Research Advocacy Workshop? You will be asked to commit 2-3 hours a month to be a Research Advocate. Your activities will be matched to your skill set and interest. This may include: - Educating communities about research - Discussing Parkinson’s Foundation studies - Participating in grant review with the Foundation - Advising research teams on what research is important to the Parkinson’s community - Helping researchers design studies You will also be invited to join Research Advocate National calls, hosted by the Foundation. These calls provide an opportunity for continued learning and connecting with other Research Advocates. - ### I am not a person with PD or care partner but am interested in this program. How can I get involved? Please contact 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 with the Parkinson’s community. ## Our History of Patient Engagement The Parkinson's Foundation has long been dedicated to making patient engagement a reality in the Parkinson's community. **Patient Engagement Timeline** - **2001:** we established [www.PDtrials.org](http://www.pdtrials.org/) as the first website and community coalition to help people with PD understand and find clinical trials. - **2006:** we established the [Parkinson’s Foundation People with Parkinson’s Advisory Council](/about-us/leadership/parkinsons-advisory-council "People with Parkinson’s Advisory Council"), the first-ever PD community council. - **2008:** we held our first research advocacy training, the Learning Institute, in New York. - **2013:** we launched our Community Choice Research Awards, a "people's choice award" of Parkinson's research where the PD community has direct input on the research we fund. - **2015:** we partnered with the Food and Drug Administration, with an opportunity for an advocate to participate in a workshop, to provide patient perspective on medical device labeling. - **2017:** we developed a robust portfolio of pharmaceutical collaborations and expanded patient engagement opportunities for research advocates. - **2018:** we launched [Parkinson's Foundation Surveys](/advancing-research/survey-data "Survey Data & Community Insights") to periodically ask people with PD, their care partners, and medical professionals about specific aspects of living with and treating Parkinson’s. This initiative aims to advance Parkinson’s care through understanding the experiences of people living with this disease and widely sharing those experiences with the PD community. - **2019:** we received an [award](/news/parkinsons-foundation-receives-award-develop-parkinsons-advisors-research-and-training "Parkinson’s Foundation Receives Award to Develop Parkinson’s Advisors in Research and Training Collaborative") to develop Parkinson's Advisors in Research Training and Collaborative, a first of it's kind model to develop patient advisory boards at five Parkinson's Foundation Centers of Excellence. - **2021:** we launched a partnership Parkinson's UK and a global pharmaceutical company, UCB, to establish a [Patient Engagement Council for Parkinson's Research](https://www.ucb.com/solutions/diseases/parkinson-s-disease/pecpr). - **2023:** we held the first Learning Institute for the [Black and African American Parkinson’s community](/blog/awareness/health-equity-at-learning-institute "Research Training Tailored to Black and African American Parkinson’s Community Aims to Advance Health Equity"), which focused on understanding their needs and priorities as it relates to Parkinson’s disease and research, aligning with our commitment to remove barriers to care and make research inclusive. - **2025:** a Joint Strategic Council was established to foster collaboration among industry leaders, national Parkinson’s organizations, people with Parkinson’s, and care partners. Together, we co-created educational resources for the Parkinson’s community, including [Your Guide to Living Fully after a Parkinson’s Diagnosis](/sites/default/files/documents/Guide-Living-Fully.pdf "Guide-Living-Fully.pdf") - a knowledge-building booklet designed for newly diagnosed people with Parkinson's. **Today,** we are leading the field in innovations in patient engagement. Through strengthening the role of patient advocacy organizations, to creating international collaborations, to co-developing news tools, we advance the science of patient engagement and bring new models to the field. ## Testimonials The cornerstone of the Parkinson’s Foundation Research Advocates program is a national network of more than 400 Research Advocates from around the U.S. who are actively changing the face of Parkinson’s disease (PD) research. - ### Hear From Advocates **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 Research Advocacy Workshop** *"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 ![john_andrejack](/sites/default/files/styles/535x680/public/images/john_andrejack.jpg?h=c9aea1bc&itok=8EjFJAdU) MY PD STORY: John Andrejack If you have the time and the desire to help yourself and others, I strongly encourage you to seek out and get involved in clinical studies. Your involvement could change everything about how we study, treat and/or cure Parkinson’s disease! [ READ John's STORY ](/living-with-parkinsons/stories/john-andrejack) ## More Research Advocate Stories ![Amy Chrest](/sites/default/files/styles/340x400/public/images/My%20PD%20Story.png?h=c9aea1bc&itok=hftbNyaf) People with PD ### [ Amy Chrest ](/living-with-parkinsons/stories/amy-chrest) READ NOW ![Vanessa Russell-Palmer headshot](/sites/default/files/styles/340x400/public/images/Vanessa_Russell-Palmer.jpg?h=c5fe38ae&itok=H_jCf9ci) People with PD ### [ Vanessa Russell-Palmer ](/living-with-parkinsons/stories/vanessa-russell-palmer) READ NOW ![John Rosiak rock climbing](/sites/default/files/styles/340x400/public/images/John%20Rosiak.png?h=c9aea1bc&itok=qVg6F0pk) People with PD ### [ John Rosiak ](/living-with-parkinsons/stories/john-rosiak) READ NOW #### Shop Our Store Proudly show you advocate for Parkinson’s research every time you sport our gear. Shop for exclusive Parkinson’s Foundation apparel and accessories, including PD GENEration items. [Shop Now](https://www.bonfire.com/org/parkinsons-foundation-131866796/) ![PD GENEration tshirt](/sites/default/files/styles/298x194/public/images/PDGENE-shirt.png?h=f4803627&itok=UH6CK4Ee) ## FAQs Interested in learning more about our Research Advocate program? Below we answer some frequently asked questions. Contact the Parkinson's Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) or [PatientEngagement@Parkinson.org](mailto:patientengagement@parkinson.org) if you have questions not answered below. ## Eligibility - ### Who can apply as a Research Advocate? People with Parkinson's disease and care partners who live in the U.S. can apply. You may apply individually or as a team. The team must be a person with Parkinson's and a care partner. - ### What do we look for in a Research Advocate? 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. - ### Do Research Advocates need to know about research before coming to the training? 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. ## Application Process - ### What should I think about before attending a training? 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. When expressing interest in attending a Research Advocacy Workshop, you will be asked to complete an interest form and a member of our patient engagement team will reach out to learn more about you, your PD journey and interests in research advocacy. If entering the program through the online course, please complete the survey emailed to you upon completion to indicate your interests related to the program. - ### Will you cover any in-person training expenses? All expenses to attend the Research Advocacy Workshop are paid by the Foundation. Hotel and meal accommodations will be provided, travel will be reimbursed. ## Training Program - ### What type of courses will I take during the training? During 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. - ### Who teaches courses during the training program? Researchers, current Research Advocates and Parkinson’s Foundation staff members teach courses in the online course and the Research Advocacy Workshop. There may be additional training opportunities where guest speakers from places like the Food and Drug Administration (FDA) share how you can play a part in their research. ## Serving as a Research Advocate - ### What do Research Advocates do? 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, making sure it is easy for people to participate. - Finally, they work with organizations like FDA to influence how research is done. - ### What commitment is involved in becoming a Research Advocate? You will be asked to commit 2-3 hours a month to be a Research Advocate. Your activities will be matched to your skill set and interest. This may include: - Educating communities about research - Discussing Parkinson’s Foundation studies - Participating in grant review with the Foundation - Advising research teams on what research is important to the Parkinson’s community - Helping researchers design studies. You will also be invited to join Research Advocate National calls, hosted by the Foundation. These calls provide an opportunity for continued learning and connecting with other Research Advocates. Advocates fill out reports on their activities for the patient engagement team. This helps us track our successes. It also includes any projects you are working on. - ### After attending the training, will Research Advocates receive ongoing support from the Parkinson's Foundation? 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. - ### What if I'm not ready to make the commitment to become a Research Advocate but I'm interested in learning more? Our patient engagement team is here to provide you with more information. Please email us at [PatientEngagement@Parkinson.org](mailto:patientengagement@parkinson.org). ## Related Materials Podcasts ### [ Episode 45: Patient Engagement in Research: The Parkinson’s Advocates in Research Program (PAIR) ](/library/podcast/45) [Listen Now](/library/podcast/45) Fact Sheets ### [ Getting Involved in Research ](/library/fact-sheets/research) [Read Now](/library/fact-sheets/research) Videos & Webinars ### [ Neuro Talk: How Does Basic Parkinson’s Research Get Us Closer to a Cure? ](/library/videos/basic-research) [Watch Now](/library/videos/basic-research) ## Related Blog Posts ![microscope](/sites/default/files/styles/500x360/public/images/researchadvocates-blog.jpg?h=0929418c&itok=XrrrSAOl) Advancing Research ### [ Parkinson’s Foundation Research Advocates Influence Parkinson’s Funding ](/blog/research/advocates-funding) READ NOW ![Microscope ](/sites/default/files/styles/500x360/public/images/researchvlog-blog.png?h=ed9ce7df&itok=ohguX2ml) Advancing Research ### [ Find Out What Our Researchers Are Working on Right Now ](/blog/research/research-now) READ NOW ![neurotalk-blog-jim](/sites/default/files/styles/500x360/public/images/neurotalk-blog-jim.jpg?h=8e7b635d&itok=ppJc-Tvr) Advancing Research ### [ Neuro Talk: How Does Basic Research Get Us Closer to a Cure? ](/blog/research/basic-research) READ NOW - Share on Facebook - Share on X - Share on LinkedIn