TTAG Webinar: Centering Lived Experience in Research

The importance of lived experience in research is becoming increasingly evident and vital.

📅 Date: Wednesday, March 26th, 2025
🕒 Time: 6PM CET / 11AM CST / 12PM EST / 5PM BST 
📍 Location: online event via Zoom

Expert panelists:

• Christine Conelea, PhD – Clinical Psychologist and Associate Professor at the University of Minnesota, Pricipal Investigator at the Minnesota Tic and Compulsivity (MnTiC) Lab.
• Carolyn Hunt – Community Engagement Lead at the MnTiC Lab
• Daniel Jones, PhD – Researcher, Artist and Activist, expert by experience
• Paula Huttunen - Board member of TTAG and STOy, expert by experience

This webinar will highlight the vital role of lived experiences in shaping Tourette research and building stronger connections between researchers and the community. Through a blend of personal insights and academic perspectives, we’ll explore how real-world experiences can transform scientific advancements and guide meaningful collaboration.

What You’ll Gain:

• A deeper understanding of why lived experiences are essential in Tourette research
• Strategies for integrating lived experiences into research practices
• Insights into how you can contribute to and participate in current research projects
• An opportunity to provide input on setting research priorities that align with community needs

Learn how personal stories and lived experiences are driving innovation in Tourette research and creating a shared path forward for researchers and the community alike. The talk will be concluded by a Q&A session.

About the panelists:

Christine Conelea, PhD is an Associate Professor of Psychiatry & Behavioral Sciences at the University of Minnesota and a licensed clinical psychologist. She specializes in Tourette Syndrome, tic disorders, OCD, and anxiety, focusing on how brain, environmental, and psychosocial factors influence symptoms and treatment outcomes. Outside of work, she enjoys exploring nature, drumming, word games, and spending time with her kids.

Carolyn Hunt serves as the Community Engagement Lead for Dr. Conelea’s Minnesota Tic and Compulsivity Lab (MnTiC).Her passion is meaningful community-engaged research. She began her career at the NIH and spent 16 years at the University of California, San Francisco (UCSF) facilitating community-research partnerships.

Daniel Jones is a Creative Practitioner, Disability Scholar, and Postdoctoral Research Associate at the University of Sheffield, specializing in inclusive research on Tourette Syndrome communities. An advocate and artist, he has spent over a decade in activism, community facilitation, and collaborative arts to highlight lived experiences and foster dialogue.

Paula Huttunen is a TTAG Board member, board member of the Finish TS association (STOy), and TS advocate. She studies Computer Science at the University of Eastern Finland and has over a decade of lived experience. She also works as an Expert by Experience and advocates for inclusion and opportunities for neurodivergent individuals.