Seth Mnookin Follows a Family Battling a Rare Genetic Disease  

Seth Mnookin

Seth Mnookin

Bertrand Might’s parents knew something was wrong soon after he was born in 2007. The baby was “jiggly” and nearly impossible to comfort; as he grew, his health deteriorated. For years, the Mights searched desperately for a diagnosis. In 2012, scientists at Duke University learned through a form of genetic analysis known as exome sequencing that Bertrand’s illness was almost certainly caused by two separate mutations of a little-studied gene called NGLY1. While the Duke researchers were able to tentatively diagnose Bertrand, they couldn’t know for sure until they located another child with the same disease—and because there’s no formal mechanism for researchers at different institutions to share sequencing data, finding that crucial second case could have taken years. With Bertrand’s health rapidly deteriorating, his parents, Matt and Cristina Might, set out to find more patients on their own. Their quest drew the attention of science journalist and author Seth Mnookin, associate director of the Massachusetts Institute of Technology’s Graduate Program in Science Writing. Mnookin was drawn by a simple question: What do you do when you learn your child could die from a disease with no other known sufferers?

In “One of a Kind,” published in The New Yorker on July 21, 2014, Mnookin told the Mights’ story. As he reported on the scientific and administrative complexities surrounding rare diseases like Bertrand’s, Mnookin says, he also discovered “remarkable amounts of grace” in the families struggling to understand and cope with their children’s illness.

Here, Mnookin tells Siri Carpenter the story behind the story:

How did you find this story?

Matt Might, the father of the child I wrote about, wrote this 5,000-word blog post in May of 2012, describing the odyssey that ended with his son being diagnosed, through next-generation exome sequencing at Duke University, as the first person in the world with this new disease. Gizmodo reposted the piece two days later, which is where I saw it.

I was very affected by it. I emailed Matt saying “Hi, that was really powerful and if there’s any reason for you to be [in Boston] and you want to give me a call, please do.” He answered me, and then four or five days later I wrote again and said “I don’t have an assignment, I don’t have any prospects of an assignment, I’m not at a point where I can devote a huge amount of time to this”—I had just gotten to MIT—“but I think your story is incredible and I’d love to start talking with you with the idea of maybe one day doing something.”

For about a year, we spoke by Skype about once or twice a month. I also went and visited with the Mights in Salt Lake City in September of 2012. It was only in August or September of 2013, after I had dozens of hours of interviews with them, that I finally pitched the story.

How did the fact that you were teaching in the science writing program at MIT affect your decision to take on this story?

This was probably the first time in my life where I had the freedom to work on something without knowing what it was going to turn into. When I was just freelancing, I couldn’t have afforded to do that. In some ways my situation was perfectly suited towards working on that type of piece. Here was something I could work on when there was time. And if I hadn’t been able to convince some magazine to let me do it, I would have been really disappointed, but it wouldn’t have meant that all of a sudden I was going to be destitute. So that’s a huge luxury.

What did you talk about with the Mights, in those early conversations?

Initially I just started talking about Bertrand’s history: the same ground that Matt had written about in his post, and that [Bertrand’s mother] Cristina had also written about—she had her own very active blog about Bertrand that she had been keeping since before he was a year old. I was just building up the timeline and getting them to go back again and again because each time, details would come out. Read more »

Making the Most of Lab Visits

5744968358_e1392eeba0_zAny science story depends on getting the facts and figures right. But visiting scientists where they work allows you to move beyond the facts to glean insights into their personalities and passions. A lab visit can reward the enterprising reporter with behind-the-scenes details about how a discovery was made and what motivates the people doing the work.

But getting the most out of a lab visit is a skill unto itself. Many science journalists I know began their careers as bench scientists with intimate knowledge of lab work and all that goes with it. But with a background in political science, I had no occasion to visit a research lab until I started writing for a science museum nearly 15 years ago. Like a lot of other science writers, I’ve learned on the job—though not without a few missteps. I’ll never forget one of my first lab visits, when my overstuffed backpack nearly toppled an outsized glass Erlenmeyer flask in Pat Brown’s Stanford University biochemistry lab. I quickly stashed my pack in a corner, grabbed my notebook and pen, and resumed the lab tour, heart racing, hoping no one had noticed.

Watch Your Step

That early close call highlights a central element of any laboratory visit: Most labs have fragile equipment lying around and sensitive instruments recording experimental results. It may seem blazingly obvious that you should be extremely careful not to break anything or interfere with the work at hand. But labs can be cramped, cluttered, and chaotic. And when you’re juggling notebooks, pens, cameras, and recorders, it’s easy to get distracted. The last thing you want to do is bump into someone who’s in the middle of a delicate procedure or place your gear on a finely calibrated instrument. Pay attention to what’s going on around you, and you’ll be fine.

Book Enough Time

I usually ask for more time than I think I’ll need at a site—which, depending on the type of story I’m doing, could be anywhere from one to several hours. You should respect your source’s time, but your first priority is to get good material for your story. If I notice my time’s up but the person I’m interviewing doesn’t appear antsy, I’ll keep asking questions until I’m told it’s time for me to go. Read more »

Call for Fellowship Applications

bwfWe are now accepting applications for The Open Notebook/Burroughs Wellcome Fund fellowship for early-career science writers. (See here for stories written by our previous two fellows.)

The Fellowship

The next four-month TON/BWF fellowship will begin on November 15, 2014 and end on March 15, 2015. A second fellowship will begin on March 15 and end on July 15. (If you are available for only one or the other of these periods, please note in your application that your availability would be limited to that period.)

During the fellowship period, fellows will produce a total of five articles for publication at The Open Notebook—a mix of “story behind the story” interviews, reported features, and other resources, with the guidance of a mentor who will help shape story ideas, provide reporting and writing guidance as needed, and edit final copy. The fellowship will be remote and will be part-time. Thanks to a generous grant from the Burroughs Wellcome Fund, each fellow will receive a stipend of $1,800.


The fellowship is open to early-career science writers with fewer than two years of professional science writing experience. (Internships and student work do not count toward this requirement). Graduate students interested in science writing are eligible. Prospective fellows must be available to devote sufficient time to completing articles as specified in the fellowship description.

Selection Criteria

TON’s editors will select one fellow for the fall 2014/winter 2015 period and one for the spring 2015 period. Priority will be given to applicants who demonstrate an ability to propose good feature ideas and who show strong writing ability.

Application Process

Applicants should email the following documents (collated into a single pdf file) to

  • A resume or CV
  • A one-page letter of interest explaining why you are seeking the fellowship and what you hope to learn from the experience
  • Up to three writing samples
  • Proposals for two TON features or multimedia stories (these can take the form of a behind-the-story writer interview; a topical feature on some element of the craft of science writing; or some other project centered on the craft of science writing). Each proposal should be no more than two paragraphs.

Separately, please provide one or two (no more) letters of reference. (Applicants who applied for our last round of fellowships, last winter, may re-use letters from their previous applications, if they wish. If doing so, please indicate as much at the TOP of your application letter.) Please ask referees to send letters directly to


Applications, including letters of reference, must be received by midnight (Central time), October 27, 2014.

A Day in the Life of Elizabeth Svoboda

Elizabeth Svoboda is a science writer and the author of What Makes a Hero?: The Surprising Science of Selflessness. She lives in San Jose, California, with her husband and young son. Follow her on Twitter @svobodster.

Elizabeth Svoboda

Elizabeth Svoboda

What I’m working on:

After a tumultuous past couple of years caring for a young baby and shepherding my book out into the world, I’m finally getting back into the swing of things writing freelance pieces on a variety of topics. Right now, I’m working on a Discover column and a health story for O: the Oprah Magazine, as well as longer essay features for Nautilus and Aeon. After writing mostly about selflessness for such a long time, I’m enjoying branching out and investing my efforts in multiple projects—although I do still spend some time on book stuff, like promoting the paperback edition that just came out this August.

I work about 20–25 hours a week these days so I can spend more time with my toddler son. Right now, I plan to ramp up to something resembling a full-time schedule once he heads off to preschool.

Where I work:

From a practical standpoint, I’ve found that I can pretty much work from anywhere. I’m the stereotypical freelancer who’s more productive away from home, which means I spend a lot of my time in coffee shops, fast-food restaurants, and libraries. But I’m also lucky enough to have an artist’s studio building in our backyard with its own wireless Internet, which serves as a nice dedicated workspace about 100 feet from the main house (especially useful for early-morning phone interviews). Read more »

Erica Klarreich Profiles an Award-Winning Mathematician

Erica Klarreich

Erica Klarreich

In March 2014, mathematics and science journalist Erica Klarreich got a rare chance to report exclusively on a top math story. Thomas Lin, the managing editor of Quanta Magazine, had convinced the International Mathematical Union to give him advance notice of the winners of the Fields Medals, which are awarded every four years and are often described as mathematics’ Nobel Prize. (Quanta, which is published by but editorially independent from the Simons Foundation, is one of the few outlets with a commitment to running in-depth articles about math.) Lin brought Klarreich on board to help write several detailed profiles of the winners, including one of Stanford University professor Maryam Mirzakhani.

Klarreich’s August 2014 Quanta article describes Mirzakhani’s career arc, from her childhood in Tehran to her groundbreaking work on hyperbolic surfaces and billiard dynamics. It casts the mathematician as a fearless and accomplished scholar and is peppered with personal details such as the doodles Mirzakhani draws when thinking about mathematics. 

Here, Klarreich tells TON-BWF Fellow Tien Nguyen the story behind the story, including the decision to bury the information that Mirzakhani is the first woman to win a Fields Medal.  Read more »

(A Slightly Early) Happy 4th Birthday to TON—And Good News


When we launched The Open Notebook in October 2010, our goal was modest: to conduct a series of intermittent interviews with writers whose work we admired. It wasn’t long before we started hankering to do more, but TON was a side project for both of us—we only had so much time to give to this labor of love.

naswLuckily, our timing was good. Just a few months after we launched, the National Association of Science Writers began its Idea Grants program, and TON was among the first beneficiaries. NASW’s generous support (along with donations from TON readers) enabled us to begin hiring writers to do interviews and report features, and it freed us to tackle new ideas, like an advice column, a database of successful story pitches, and writer profiles. In the last four years, we’ve published more than 50 in-depth interviews with leading science, environmental and health journalists; about 30 reported features on specific elements of the craft of science journalism, such as finding and sharpening ideas, pitching stories, handling unreliable sources, taking effective notes, identifying an effective narrative structure, and weaving exposition into narrative. More than 100 writers and editors have given guidance to their fellow journalists via our advice column, Ask TON, and our series of one-minute videos, Single Best. Dozens have contributed query letters to our pitch database, which now contains 80 successful pitches. Some intrepid souls have allowed TON readers a glimpse into their workspaces and daily routines, through our Natural Habitat and A Day in the Life series.

bwfLast year, the Burroughs Wellcome Fund awarded us a grant to launch a fellowship program for early-career science journalists. Since January, our first two fellows, Tina Casagrand and Tien Nguyen, have worked with TON mentors Kendall Powell and Alexandra Witze to create almost a dozen reported features and interviews, on subjects such as conducting data journalism, writing nut grafs, creating radio and podcast scripts, and writing headlines.

Today we’re delighted to say that both NASW and BWF have decided to provide continued support to TON. Over the next year, with NASW’s funding, we’ll be able to publish about a dozen more interviews and reported features and another dozen Ask TON columns (which are now being edited by the talented Rebecca Boyle), as well as assorted other resources. And BWF’s funding will allow us to offer two more fellowships for beginning-level science writers (stay tuned for an official call for application information soon).

We’re genuinely thrilled to partner with NASW and the Burroughs Wellcome Fund, and very grateful for their continued support.


Image at top by Shutterstock.

Diversity in Science Writing: A Survey



For a tribe that loves empirical evidence, science writers have very little data about race and ethnicity among their ranks. There’s no census tallying up the ethnicities of those who do this job. Yet when you look around the room at work, school, or professional conferences, it seems clear that people of color are underrepresented in science writing.

Editors’ note: This article is published in collaboration with

Why is this a problem? Apoorva Mandavilli, editorial director of and an adjunct faculty member at New York University’s science writing program, wrote in an essay published in Medium last year: “Without diversity in newsrooms, what you get is a small group of (mostly privileged) people writing for another small group of (mostly privileged) people. Entire stories are missed, and those that do get written have the same, tired perspectives, missing nuances of color, race, class, gender and ethnicity.”

The National Association of Science Writers (NASW) has tried to recruit more diverse journalists, but its efforts don’t seem to have worked, as Mandavilli reports.

Her story got me thinking it’s time to systematically ask science writers of color why they are underrepresented among science writers, and about their own experiences in the workplace. With The Open Notebook, I designed and distributed a survey for minority science writers. I received only 46 responses from U.S.-based respondents, itself a telling statistic: Compare that with the 618 responses to the NASW’s salary survey last year.*

The majority of respondents said they hadn’t noticed any bias against them in their careers, but a few shared stories of teachers and bosses whose actions made them feel they didn’t belong. Two people shared stories of overt discrimination.

The respondents had a lot to say about why certain racial groups are underrepresented in science writing. The most common theme was money—or lack thereof—suggesting that fellowships and scholarships intended specifically for minority science journalists may be a powerful diversifier.

The survey is of course not a representative sampling of science writers of color. The editors at The Open Notebook and I tried to publicize the survey widely—through social media, by directly contacting writers, and by posting to mailing lists, including those of the NASW, the Society of Environmental Journalists, the Association of Health Care Journalists, and several graduate programs in science writing. It’s impossible to know how those who participated in the survey might differ from the overall population of minority science writers in terms of employment status, income, geographic location, or other qualities.

Still, the individual responses and experiences are interesting, and the aggregate informative. They tell us, for example, that even if instances of bias are not universal, they are real. And identifying the causes underlying science writing’s lack of diversity is a first step toward finding solutions.

On to the results! Read more »

A Day in the Life of Ann Finkbeiner

Ann Finkbeiner is a freelance science writer who occasionally writes about science advising but usually writes about astronomy and its subset, cosmology. In her words: “I’m married to a retired physicist who ends every explanation with, ‘Your problem is, you don’t know any physics,’ which is true but not a help. I used to run the graduate program in science writing in the Writing Seminars at Johns Hopkins, the graduates of which were and are superb. I’m co-proprietor of The Last Word on Nothing, a collective science blog, also superb.” Follow Ann on Twitter @annfinkbeiner.

Ann Finkbeiner

Ann Finkbeiner

What I’m working on:

I’m freelance, no regular paying gigs. I used to run a small graduate program in science writing and worried, when the program was taken out back and shot, that I wouldn’t remember how to scramble. ​No worries.

I’ve just finished a story on how galaxies manage their gas supply, which is way more interesting than it sounds, though you’d think I’d know by now how to make it sound as interesting as it is. The story is for Science, for an editor with whom I’ve worked a few times, and a top editor with whom I’ve worked many times. And though I feel at home with these editors, I’m scared to pieces. I’m not sure how enthusiastic they were about the story in the first place, and I’m pretty sure they’ll notice the artfully papered-over gaps in it, let alone the gaps I didn’t even find. I’m worried that these editors with whom I’m so comfortable will be disappointed in me and tell me to write it over again from scratch, or they’ll maybe tell me it’s not even worth saving and here’s $10, go buy a drink. I’ve been a professional writer for maybe 30 years, and terror and despair and self-doubts never go away. I’m used to them. The solution to the problem is easy anyway: I trust that the editors are unlikely to kill the story; and if they do tell me it’s terrible, I’ll fix it.

Also, I’ve just been outmaneuvered by a reviews editor at Nature into reviewing in a small number of words two large, substantive books on related and difficult subjects, which is a real honor, except for the pay that no self-respecting freelancer should ever work for but hey, honor.

And next I have to think up another story to sell to someone. I should probably be trying to think up another book too. Right now I have nothing in mind for a story but I’m full of hope and optimism. I have even less in mind for a book and won’t discuss it. Read more »

Four Editors Give Tips on Writing Headlines. You Won’t Believe What Happens Next.

headlinesGood headlines achieve balance. They pique the reader’s interest without demanding it, they allude to the story without giving it away, and they give specific details without being technical. On top of that, good headlines should also be “funny, surprising, clear or crisp,” says Laura Helmuth, the science and health editor at Slate.  Read more »

Ask TON: Conducting and Condensing Q&A Interviews

questions andanswers

Welcome back for another installment of Ask TON. This week: Writing, and editing, Q&As. (Click here to read previous installments.)

Sometimes, the best way to share a good interview is just to let a source speak in his or her own words. But writing a good Q&A isn’t as easy as ask-and-answer. There’s plenty of organizing before the fact, followed by (likely heavy) editing, condensing or otherwise shortening into a reasonable, readable length with good flow.

If you’re assigned a Q&A with a well-known doctor or scientist, how do you approach it? What’s the one question you should definitely ask anyone, regardless of background? And how do you decide what to leave out of a Q&A? Read more »

Naming the Dog: The Art of Narrative Structure


A few years ago, I adopted a puppy. I’d picked the runt of the litter and in the weeks that I waited for him to wean, I made a list of a dozen or so potential names. In the end, I used none of them. I needed to spend time with the dog before I knew whether he was a Baxter or a Jack or something else. Turned out, he was Oskar, a name that wasn’t on my list. I simply knew after a day or two that this was the perfect name for my dog.

For me, structuring a narrative feels like naming the dog. The structure falls out of the story itself. I can’t outline it in advance; I need to get deep into the story and the reporting first. I don’t know what I’m looking for, but I know it when I see it. Sometimes I recognize as it’s happening that a scene will become the lede that sets the stage for the story (like when a source’s father slapped me on the head); other times it’s something seemingly random, like a David Bowie tune on the radio that helps me articulate a story’s theme. Once I know what the story is about and have decided on a lede, I look for the ending. With those pieces in place, I start writing. Afterwards, I can look at the story and see that I’ve used a particular structure, but I find it impossible to set a structure and then write to it.

This process of mine works fine, but it can seem haphazard, and I’ve always had a vague notion that there must be a better way to approach structure. If anyone has a method, I figured it would be Sandy Blakeslee, the author of eight books and countless articles for the Science Times. Blakeslee was one of my first mentors, and she’s always struck me as a particularly organized and efficient writer.

When I called her recently to ask about her process, she confirmed that she always sketches out a structure before she writes. “It’s like a crutch for me, I need something to hang on to or else I’m wandering,” she says. “Some people say, ‘Oh, just start writing and don’t worry about how you put it together right away.’ I think that’s the worst advice you can give anybody, because if you don’t know where you’re going, you’re lost.” Before she writes, Blakeslee outlines the story’s beginning, middle and end and then relentlessly sticks to her outline.

Unlike Blakeslee, I never outline, but I do spend hours thinking about my story’s lede and narrative arc before I ever sit down to write. For every hour I spend writing, I spend many more fidgeting (or running or skiing) while turning the story over in my mind. Often I’ll deliberately focus on finding a lede and it’s no accident that my best ones have come to me while running or biking or walking the dog. Blakeslee admits she does this too, and our approaches may not be as different as they seem.

“You’re actually thinking about structure much earlier than you think you are,” says Tom French, a Pulitzer Prize-winning journalist who teaches at Indiana University. “The moment you decide on the universe of your story, you’re making a decision about structure.” As an example, he points to his book, Zoo Story: Life in the Garden of Captives. He wanted the book to explore the notions of freedom and captivity, and when he learned that Lowry Park Zoo in Tampa was preparing to load 11 previously free-roaming elephants into crates to fly them across the ocean to their zoo, he decided that this elephant transfer would play a central role in his story. French’s decision to focus his book on this incident and the Tampa zoo in particular was a major structural decision that he made before he ever started writing. Read more »

Creating Characters on the Page


“There’s no better place to find characters than science,” Erik Vance says. He should know; he makes characters come alive on the page all the time. Vance, a freelance writer based in Mexico City, has covered a wilderness medic who is creating a nasal spray to buy time for snakebite victims, a whale biologist who specializes in cetacean autopsies, and a woman who spent her teenage years in a back brace and ponders the possibility of treating Parkinson’s patients using the placebo effect.

That makes Vance and other writers an invaluable resource for tips on creating a nonfiction character. How can a reporter best capture the details of a living, breathing person in the black-and-white of ink? Especially when that person is a scientist, whose stereotype is that of a boringly analytical character? Read more »

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