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 […]
Archives for March 2014
The goal posts of life
Earlier this week, John Sharp tweeted a link to a New York Times column by Abigail Zuger, MD, about the “Unworried Unwell” — people who have been told that they are very ill, but do not seem to want to do anything about it. The comments are wonderful, particularly the Reader’s Picks, including helpful tips about […]
3 home health care hacks
I recently spent an afternoon with a dear relative who is being treated for cancer. Her medication regimen is so complicated that my mom, an experienced caregiver, visits her daily to help sort all the different pills into all the various boxes (and make sure they get swallowed). They showed off three health care hacks […]
“Pursue hope like it’s an outlaw.”
– Afternoon Napper during Rare Disease week in Washington, DC I love that line and that spirit — and this image captured by John Schinker because it looks like these zebras have formed a posse and are heading out on the trail together. When you hear hoofbeats, think “horses” but don’t rule out zebras.* And if you’re […]
Persistence vs. flow
The Pew Research Center has released its latest report celebrating the 25th anniversary of the Web. This one looks forward to 2025, with experts’ predictions. Here’s my favorite quote so far, from the “Pithy Additions” section: Jerry Michalski, founder of REX, the Relationship Economy eXpedition, observed, “The Internet gives us Persistence — the ability to leave things for […]
Health data’s adolescence
I wrote a guest post for the Health Data Consortium — here’s the start of it: This year marks the 25th anniversary of Sir Tim Berners-Lee’s proposal to create what we now call the Web, the visual, hypertext organizing system which overlays the internet. The pace of internet adoption gathered speed once people could more intuitively […]
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