When her daughter, Sara, transformed from an active teen to a nearly catatonic shell of a person, Eileen Quinn knew she had to take action. Unfortunately, since Sara lives with Down syndrome her symptoms were likely to be dismissed as sad but inevitable. But Quinn had a hunch that her daughter’s rapid decline was not […]
Champions
Discovery Diaries with Damon Davis
Damon Davis has a new podcast, Discovery Diaries, and I was honored be among his first guests. We got into a wide range of topics: the origins of my interest in patient-led innovation; artificial intelligence and how patients, survivors, and caregivers should be included in the design of AI tools; our time working together at […]
Wow! How? Peer Warmline
This essay is part of my LinkedIn newsletter series: Wow! How? Health. About two million people in North Carolina experience a mental health or substance use disorder crisis each year. Historically, about half did not receive treatment because of cost, leading to repercussions for families, communities, and individuals. A new Peer Warmline, staffed by counselors […]
Q&A with Deborah Kalb
Deborah Kalb’s blog is a treasure chest full of Q&As with authors and illustrators and I’m honored to now be part of it. 1. What inspired you to write Rebel Health, and how was the book’s title chosen? As a researcher, I spend time in communities led by patients and caregivers who build new medical and assistive […]
The Other 80
Claudia Williams created The Other 80 podcast to talk about how medical care only accounts for 20% of health outcomes. The other 80% includes factors like food, housing, transportation options, social connection, etc. I was honored to be interviewed for episode #27, now available wherever you listen to podcasts. You can hear in my voice […]
Wow! How? PEARS
Tal Golesworthy lives with Marfan syndrome, which is characterized by long bones, flexible joints, eye problems, and, most threateningly, weakness at the root of the aorta. Over time, this major blood vessel becomes enlarged and, if left untreated, ruptures. Clinicians told Golesworthy he had few options, none of them attractive: wait and potentially experience a […]
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