My mom always took the time to walk around the nursing home and talk to the residents each night before she left, often to my dismay and beyond the capacity of my kid-sized patience. Now, looking back, I realize why she did what she did – “people just need to be heard”, she would say, “especially when you’re older – it is so valuable to have someone listening”. Here at the Parkinson’s Story Exchange, we believe that everyone deserves to tell their story and have it heard.

 

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This project sprouted when I was a Creativity in Research Scholar, through an interdisciplinary fellowship program through the Stanford design school or d.school designed to help PhD students be more creative with their research and stretch in ways that they never before would have imagined. With mentorship and guidance from two professors and the support of awesome fellow students, I brainstormed projects to help the clinical Parkinson’s population that I worked with daily, struggling to figure out what they needed and what I could provide. Eventually I figured out that I needed to bridge a gap between a research population that had one understanding of this disease with a patient population that had very different experience. In partnership with National Public Radio’s StoryCorps, I started the Parkinson’s Story Exchange with the help of Stanford Librarian Gillian Kumagai, to increase empathy between Parkinson’s researchers and those affected by Parkinson’s. As a clinical researcher and engineer, I am lucky to be at these intersections and pull together different perspectives. Gillian and I hope that this project helps people to tell and share their stories, and encourages others to do so!