A friend recently shared the following story of his successful navigation of the American health care system to get innovative treatment for his ankle. I was so impressed that I thought I’d post it here as a beacon for anyone else searching for answers about the same challenges he has faced. It’s pretty geeky and […]
Matt Might
Public Q&A: Peer advice during a pandemic
A community colleague wrote: Our neighborhood list serve has all sorts of ‘advice’. I’ll spare you:) Are you able to assess how peer-to-peer exchange is playing out with all of this? In the spirit of Public Q&A, I invite readers to join me in responding: Yes. I’m seeing a ton of peer-to-peer exchanges of information, […]
Case study: One in a million diagnosis
When we get sick or face a new challenge in our lives, we often feel alone, but we shouldn’t. There are people who have been in the same situation and are eager to help if they only knew how to find us. That’s one of my core beliefs, based on the fieldwork and research I’ve […]
The Rise of the New Bio-citizen
Over the next two days, I’ll be part of a group convened by Eleonore Pauwels and Todd Kuiken to discuss barriers to citizen-driven biomedical research. If you are intrigued, read the report, “The Rise of the New Bio-citizen,” which lays out how people “are pursuing a range of activities from analyses of genomic data for […]
Champions of Change
Nine Precision Medicine “Champions of Change” were honored at a White House event on Wednesday, July 8. I count everyone in that picture as a community colleague — and some as dear friends. My role at the event was to moderate a discussion with four of the Champions: Amy Gleason, Anish Sebastian, Hugo Campos, and Howard Look. […]
Every-day magic
I’ve been following Bertrand Might’s story for a few years through his parents’ blog about his “movement disorder” (which turns out to be related to his incredibly rare condition, NGLY1 deficiency). Last week, Matthew Might co-authored a commentary with Matt Wilsey in the journal of the American College of Medical Genetics and Genomics: “The shifting model […]
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