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This Sunday, Feb. 28, is the third annual (and second global) Rare Disease Day. In addition to public events planned across the U.S., Europe, and elsewhere to raise awareness of specific diseases and of rare diseases in general, there are video and photo contests open through March. The video that happened to be on the home page of the official website yesterday, The Boy Beneath the Bandages, by a woman whose young son has recessive dystrophic epidermolysis bullosa, is simple and effective. I thoroughly recommend last year’s contest winner, too, also very simple, cheeky, and informative. Bet you won’t forget the name phenylketonuria afterwards.

Among the many great things happening on Sunday—including an exhortation for everyone to wear jeans in honor of genes and the Progeria Research Foundation’s Find the Other 150 campaign—will be the premiere of a new Discovery Health TV series called Disease Detectives (8 p.m. EST). Like a sort of House in real life, it follows staff and patients in the National Institutes of Health’s Undiagnosed Diseases Program as they try to figure out what’s going wrong in the bodies of people who are losing hope that doctors will ever reach a diagnosis. Some of them have rare diseases; some have diseases never seen before. I’ve read a few articles and case studies and attended a couple of presentations by the UDP staff, and it never ceases to amaze me what can happen to the human body and how dedicated people can be to both solving scientific mysteries and helping those who’re losing hope. There are a few preview clips (with ads) at http://health.discovery.com/videos/disease-detectives/

Resources:
- http://rarediseaseday.us/
- http://www.rarediseaseday.org/
- http://rarediseases.info.nih.gov/RareDiseaseDay.aspx

I’ve gone… bacterial

Cool Video: Blinking BacteriaWell, I am a happy camper this week. The latest little video I made for NIGMS was done under embargo — that’s when papers are released to the media ahead of publication so journalists can prepare stories beforehand — so it was newsy. Because we worked with the researcher and his public relations guy to have it included in the university’s press release, and, more so, because the finding and the images were cool, the video got picked up by New Scientist, Technology Review and Popular Science. Seeing (and hearing) my work pop up there when the embargo lifted yesterday afternoon was great.

Since I interviewed the principal investigator a couple of weeks ago and am working on an article about the research, it has also been interesting to see how the three magazines covered the story — and how one of them fell into several traps you want to avoid when reporting new findings in general.

Next step: get more of my freelance writing in those mags!

Holiday Odds

Happy holidays from a gate at Baltimore-Washington International Airport, compliments of Google-provided wireless. Thought I would share a pair of seasonal articles now up at Book of Odds:

Who’s Lighting Hanukkah Candles?

O Christmas Tree, O Christmas Tree, How Lovely Are Your (Burning) Branches

Quote of the Week

“A fall-related injury was defined as one received when a person descended because of the force of gravity and struck a surface at the same or lower level.”

From a 2004 CDC report on falls during the holiday season

Sagan (et al) Sings

Carl Sagan, Stephen Hawking, Richard Feynman, Neil deGrasse Tyson. Four incredible physicists and science communicators. Personal favorites, too, and some of them role models; I put Sagan and Tyson in my application essay to MIT. Oh, and add Bill Nye to the mix: a hero of many.

I’m probably one of the last to see this, but a composer has mashed up footage of all five of these guys, Auto-Tuned their voices, and made two awesome songs. Awesome not only for the star power harnessed but because the songs are meant to educate and share a passion for the vastness of space and the things around us and ourselves, and because of the concept and execution, and because the music is good, too. Hawking harmonizes with himself! Sagan does a dead-on Kermit the Frog impression!

Is this an example of successfully reaching new generations of students through creative media? Henry Jenkins and colleagues would know.

AMC had a movie promo for The Shining a couple of weekends ago where an initial repetition of the twins’ “Come play with us, Danny — come play with us, Danny,” combined with some percussion, made it sound like the start of just this sort of audio mashup — like the promo producers could have done a great video just layering the voices on top of each other to form their own rhythms. A capella drama.

I’d love to try playing with this sort of thing. But for what, I wonder?
 
 
 
YouTube links: A Glorious Dawn and We Are All Connected

Dueling Journos

I was chuckling at these Onion stories:

Obama’s Declaration Of Swine Flu Emergency Prompts Pro-Swine-Flu Republican Response

Report: Majority Of Newspapers Now Purchased By Kidnappers To Prove Date (“These are sick, sick individuals,” Ridell added. “God bless them for saving our industry.”)

Fists Fly After Post Editor Tells Writer, ‘It’s the Second Worst Story I Have Seen in Style in 43 Years’

Oh, wait. That last one was real.

According to the Washingtonian, on Friday, Washington Post Style editor Henry Allen punched feature writer Manuel Roig-Franzia hard enough to send him to the floor of Allen’s office. Then an executive editor broke it up. Apparently Roig-Franzia had insulted Allen after Allen ranted at Roig-Franzia’s co-author about the quality of an article they’d just turned in.

I love this part:

It should be noted that Allen is nearly seventy, but he served in the Marines in Vietnam. He also won a Pulitzer prize in 2000 for criticism. Both apparently came into play when Allen jumped Roig-Franzia.

And the speculation as to why Allen was tense enough to break out the old right hook?

Working part time on contract, Allen seethed over the lost art of long-form journalism.

Resorting to fisticuffs is probably a more cathartic response than hosting panels about the imminent demise of the art.

On the other hand, panelists and attendees get to keep their jobs.

Man. I don’t know if this story is true, but it means something that we believe it right now.

Edit: The headlines automatically linked below this post are priceless.

So the conference was great. There isn’t much suspense to tell it now, but my flight was an hour late getting out on Friday from Baltimore, and since that’s exactly how much time I had to make my (airline-scheduled) connection in Memphis, I didn’t know if I was going to make it to Austin. The next flight wasn’t until 1 p.m. the next day, getting me in way after it would have been most useful to be there. Long story short, I made some friends under adversity (an Austin-goer from nearby University of Maryland College Park and a tattoo artist expat living in Amsterdam), we just made the connection, the connection was then itself more than two hours delayed, and I got to the hotel at 1 a.m. Only to get up at 6:15 for the pitching session sign-ups! But I wasn’t complaining (much) — I’d rather have had four hours of sleep than not be there at all.

Taking off

The story pitches went well, along with a plenary speech by Dan Gillmor about capitalizing on change rather than panicking or doomsaying. I networked at the networking lunch. Actually, I networked like crazy all weekend. It wasn’t hard; everyone was there to do it. Freelancers looking for work, editors looking for writers, collaborators looking to meet or touch base in person. Some were competitive, most friendly, others pessimistic about the future of journalism, but nothing’s new there. I was surprised at how many people wanted to learn from me instead of the other way around. People really are interested in the skills and principles we learned at MIT and the sort of social- and multimedia work I’ve been doing for the NIH.

But in general, such a good time to see people such as Robin Lloyd again, unexpectedly meet other personal role models of mine like Robin Marantz Henig and Steve Mirsky, and generally talk with people who have either been in the business a while or who are also in the early stages and/or trying to negotiate the PIO/freelance worlds. (PIO = public information officer, the new term for public relations.) I ran into my RA from my freshman year of college, of all people. Embarrassingly, I had no idea who she was until she introduced herself. Other than that, I’m proud of myself. The introvert switch flipped so effectively that I couldn’t settle back down to my quiet old self for days afterward.

There followed afternoon sessions on social media and pitching science to non-science magazines. The latter was very useful for me, the former less so as someone who uses social media, but (a) it did get me on Twitter and (b) there were a few tips on differentiating social media bookmarking/rating sites that might help with my job.

Also a happy hour with MIT science writing alumni (there were maybe nine of us plus a professor) — hi, Artful Amoeba! — and a welcome reception at a bar in town with a live country band. The music was loud, but if nothing else it was great to be outside without a jacket at night when I’d just left 45 degrees and rainy.

Chilling out in the courtyard

More sessions and socializing on Sunday, beginning with a talk on new data-mining techniques for online journal databases and disease-related genes that I’m covering as part of my fellowship. There was also a talk on trying to quantify personality traits by studying people’s possessions and environments, but I was less impressed than I might have been had I not taken a course with Sherry Turkle, whose work is based on the idea that you can’t understand a person until you’ve spoken with them about what particular objects mean to them — what they’ve invested in the objects emotionally, and what relationships they have with others through those objects, that infuses the object with more meaning than anyone can figure out just by looking at it.

On Monday after listening to famous physicist Steven Weinberg give a primer about the Large Hadron Collider and the principle of symmetry, a group of us took a tour of some labs at the University of Texas. Highlights included:

  • bubbling tanks of algae being grown in search of a cheap, electrically-based production method for biodiesel — everyone wanted to take pictures of that room;
  • a lesson in the ways indoor air is more toxic than outdoor air;
  • a truck that can shake the ground in three planes to test for faults, or check the ground strength at a particular time, or something related to earthquakes, anyway (it was impossible to hear the guy);
  • vehicles equipped with computer-controlled actuators that serve as quick, energy-saving shock absorbers for armored vehicles on unpaved terrain;
  • a supercomputer lab, or rather the display room for some of the supercomputers’ terminals; and
  • robots! Soccer-playing robots, even. Apparently there is a Robot World Cup, and these foot-tall autonomous (not remote-controlled) Storm Trooper-looking androids and robo-puppies are learning to interpret video footage from their “eyes” to determine where they are on the field, where the ball is, where their teammates and opponents are, and how to score a goal. The one demonstrated for us had a case of gearthritis or somesuch and had to be propped up so it didn’t tip over when it tried to kick the little orange ball. But they were adorable and super-cool. As was the demonstration afterwards simulating automated traffic control with automated cars, barreling past each other in a ten-lane intersection in a way that would have human drivers screaming and covering their eyes.

Bubbling algae

Robot World Cup contender! Well, almost.

That evening was the much-anticipated trip to see the bat colony. I have to say, from our vantage point in a little park at one foot of the bridge, the introductory speaker was more entertaining than the bats. (Although the speaker was actually quite entertaining. His lecture would have made a great Radio Lab monologue.) We couldn’t see them very well down there, the bats not-quite-silhouetted against the skyscrapers. We could hear them just fine, though.

Austin, sort of

Prickly pear blossom

And then I flew back Tuesday, returned to work Wednesday, and have been recovering ever since. I’ve got pages of notes here with actual tips and facts from the panels I attended — if anyone wants to see them instead of listening to anecdotes about my trip, I’m happy to share. There’ve been links going around at #sciwri09, too.

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