Bertrand Might, index patient for new genetic disease, rushed to the ER

July 20th, 2014 → 2:39 pm @

Bertrand Might in the ER on July 19, 2014

Bertrand Might in the ER on July 19, 2014

In this week’s New Yorker, I wrote about NGLY1 disorder, a new genetic disease first identified in 2012. Bertrand Might, a six-and-a-half-year-old boy who lives in Salt Lake City with his family, was the index patient, and I began reporting the story not long after Bertrand was first diagnosed just over two years ago.

I learned about Bertrand’s story after reading a blog post his father, Matt Might, had written about the family’s diagnostic odyssey. I got in touch with Matt a few days later, and since then have spoken with him and his wife, Cristina, dozens of times, usually for hour long Skype sessions. I’ve visited the Mights in their home, have met Matt’s and Cristina’s families, and have had Matt over to our house in Boston for dinner. I’ve even sung duets from Frozen with their adorable daughter, Victoria. They are truly a remarkable family. They’ve endured more than most people could imagine and somehow remain simultaneously relentless and upbeat. They also happen to be two of the kindest, most generous people you could meet. (more…)

Post Categories: Genetics & Rare diseases

Ask me anything: Reddit thread open for Mahola video interview

July 26th, 2011 → 8:02 pm @

Mahalo, the “human search engine” with the motto “Learn anything,”^ has asked me to take part in their “ask me anything” author video series. If you have a question you’d like to throw into the mix, put it in the comments of this Reddit thread before tomorrow, June 27, at 4pm Eastern time.

I’m sure there’ll be lots of questions about The Panic Virus, but as the name of the feature indicates, it’ll cover pretty much everything — and some of the questions posted up there so far have to do with the future of print media (a topic I write about in this week’s New York magazine) and the common threads between my books. I’ll be answering some of the most interesting queries via Skype; the video will be posted sometime in the next week.

^ Mahalo is a Hawaiian word that actually means “thank you.” If you haven’t previously checked it out, there’s an explanation of  how the Mahalo Answers work here and the answers to some other Mahalo FAQ over here.

Post Categories: Housekeeping & Interviews

Discussion topic: Would prenatal vaccine conversations help assuage parent fears?

June 11th, 2011 → 11:16 am @

I have a piece in tomorrow’s Washington Post Outlook section titled “An early cure for parents’ vaccine panic.” It outlines some thoughts I have about implementing a standard pre-natal appointment for parents to discuss vaccines and vaccine safety. In a recent post on my blog at the Public Library of Science, I started what I hope will be a fruitful back-and-forth for doctors and parents to share their thoughts on the issue. Check it out — I’d love to hear what you think.

Post: Parents and pediatricians: Do you think a pre-natal discussion about vaccines would help assuage fears? (The Panic Virus Blog, The Public Library of Science.)

Post Categories: Blog & Discussion

STICKY POST: Look me up in the Public Library of Science

May 29th, 2011 → 8:12 pm @

At the end of April, I moved my blog to the Public Library of Science’s Blog Network. Since then, I’ve been trying to figure out the best way to keep readers of this site informed about what’s going on over there. There doesn’t seem to be any elegant solution…at least that I’ve been able to figure out.

So: from now on, those folks interested in The Panic Virus Blog should go here — and for those of you who prefer using RSS readers, you can get my feed here.

I’m also on Twitter, I recently joined Tumblr, and I’m going to be building up The Panic Virus Facebook page over the next few weeks — so there’ll be plenty of ways to keep up with what’s going on.

Post Categories: Blog & Housekeeping

Discussion of measles outbreak today at 1:35 pm on KOMO-Seattle

May 26th, 2011 → 12:53 pm @

According to the Seattle Post-Intelligencer, Washington State has one of the highest school-immunization exemption rates in the country — and the current measles outbreak that’s spreading across the country has reached there as well.

Today at 1:35 pm PST, I’ll be on KOMO-Newsradio AM 1000/97.7 FM to talk about the ways in which declining vaccination rates have contributing to the situation. If you’re not in the station’s broadcast range, you can also listen online.

Post Categories: Media appearance

New on PLoS: The financial implications of the US measles outbreaks

May 24th, 2011 → 11:58 pm @

Earlier today, the CDC released a report about the measles outbreaks that have been occurring across the country since the beginning of the year. (Hat tip to USA Today‘s Liz Szabo for this story.) One reason measles outbreaks are so scary (and so difficult to contain) is that measles is the most infectious microbe known to man–it’s transmission rate is around 90 percent. It has also killed more children than any other disease in history.

Read the rest of this post on The Panic Virus PLoS Blog…

Post Categories: Blog post & PLoS

This week in PLoS: Manufactroversies, RFK Jr.’s revival, and the definition of a Mnooklear Attack

May 15th, 2011 → 8:53 pm @

Among the news I wrote about this week was a press conference in Washington DC ginning up the latest manufactroversy over vaccines and autism. (Perhaps not surprisingly, Fox News was one of the few news organizations to take the bait.) There are also highlights from a recent review on Blogcritics and a shout-out in the New York Post from Sarah Vowell. I also noted that Rolling Stone revived the error-filled Robert F. Kennedy Jr. story about thimerosal that the magazine ran in 2005 and disappeared sometime last year.

The most amusing post (for my money, anyway), was titled “In which my Seussian name is drafted in service of an Orwellian conspiracy,” and it deserves reprinting in full:

Back in late 2002, when I was a Newsweek media columnist covering the implosion of The New York Times, Mickey Kaus married my name with my employer’s and came up with Mnoosweek. It wasn’t quite a nonce usage — Kaus used it once more in Slate the following spring and Daniel Drezner referenced a Mnoosweek piece that summer — but that was pretty much it. It’s hard enough to spell Mnookin, never mind needing to turn it into a witty aphorism.

But! I needn’t have worried: It turns out I’ve recently been conferred the status of my very own eponymous neologism: the Mnooklear attack, which, according to Urban Dictionary, is:

The type of desperate attack in which public health officials and drug companies engage when trying to hide their causal roles in the the autism epidemic. Usually involves hiring drug addicts. The main goals of Mnooklear Attacks are to protect shareholders and to keep CDC staff out of jail. Ex: Did you see the Mnooklear Attack on universally respected journalist Robert MacNeil?

Occam’s Razor it ain’t…but hey, with a name like mine, I’ll take what I can get.

Post Categories: Blog post & PLoS & sillyisms