All posts by bfiggefox

What does e-patient mean?

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When I use the term epatients, people ask me what that means? I stumble to explain.

Here is an example from a glossy magazine, Good Housekeeping.

 I started getting connected with other EB parents through my blog. It was a tool God used to save Jonah. I’d describe issues we were facing, like acid reflux or not eating or bandages that stuck, and moms would suggest what worked for their kids. To our doctors’ credit, they didn’t look at me like I was a crazy person when I brought in suggestions but gave them a shot. We all partnered to try to get him as stable as possible.

Read the whole article “My Son Blisters When I Hug Him” here. 

Until I get my elevator speech smoothed out,participatory here is another explanatory link.

 

Just tell it so they get it: gerrymandering

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As Sam Wang talked this morning on how to countermand the evils of gerrymandering —  legislative districts structured to favor one party — I kept thinking “he’s the perfect person for this.” Wang spoke this morning at the Princeton Regional Chamber breakfast. 

The battle to redistrict Congress will be fought in the courts, probably leading to the Supreme Court, which has turned down several cases for lack of a manageable standard.  As Wang said, lawyers don’t go to law school because they like math. (Nodded agreement from the 80+ attendees, with more than the usual number of lawyers.) Lawyers might be good in math but it’s probably not their forte.

So if you want to use algorithms to uproot gerrymandering, you’d better figure out how to make that math accessible to the lawyers’ brains, especially the SCOTUS brains.

If any one can do that, Wang can. He is an eminent neuroscientist with an unusual facility to state complicated concepts in simple ways, as in his first book “Welcome to Your Brain.”

Though Wang is still doing neuroscience he is also consulting on political statistics via the Princeton Election Consortium. During the question page he talked about testifying in various court cases and presented various “manageable standards.”

His webpage even has an option to do the math yourself – pick a data set and work out whether those districts are configured fairly.

On that page, Wang says he wants to do more than use math and polls to explain politics. He wants to stimulate people to act. Not just Democrats, but “all Americans who want to save institutions – whether they are liberal or conservative, Democratic or Republican.” He recommends that we all

  • joining our U.S. Representative’s party (even though that may be hard to do)
  • work to keep the media ‘on task’

Are you looking for ways to make change? Read his  action items for democracy’s survival here.

Says Wang: “Voters should choose their representatives, not the other way round.”

 

Sam Wang talks – consumes no crickets

wang-bugSam Wang speaks to the Princeton Regional Chamber TOMORROW (if you get this on Tuesday), i.e. Wednesday, February 15.

He spoke to the chamber back in 2009 on  the title of his book “Welcome to Your Brain.

He made some election predictions last September at the Princeton Public Library.

He famously ate crow (or, rather, crickets) in a post-election mea culpa. :

He was included in the U.S. 1 cover story “Living in a Trump World” in January.

On Wednesday, February 15 for a Princeton Regional Chamber breakfast at the Nassau Club his title is The Long Collapse: A Data-Based Look at U.S. Politics from 1994 to 2017.  

Sorry for the late notice but if you see this before Wednesday at 7 a.m. it’s not too late to attend.

Discrimination x three: Princeton stories

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Keeanga-Yamahtta Taylor, photo by Denise Applewhite

Thanks to Planet Princeton’s Princeton Wire newsletter for the news roundup that alerted me to an article on housing discrimination research at Princeton University by Keeanga-Yamahtta Taylor, assistant professor of African American studies and author of From #blacklivesmatter to Black Liberation. She has a fascinating biography.

“Putting the blame on the individual suggests that racism can be overcome by education alone,” said Taylor. She is quoted in the article as reminding us that throughout history racism has been used as a way for the powerful to control others for material gain — and it is still used that way.

Another amazing but grim story from the Planet Princeton lineup is about the wrongfully imprisoned Princeton alumnus from Iran. 

If first aired on the Moth Radio Hour, which if you didn’t know about, you want to.

Less grim but still unsettling is the Daily Princeton article on research showing that, at the tender age of six, kids think boys are smarter than girls.

Race discrimination, nationality discrimination, gender discrimination — does this go on  forever?  Parents, start with your two year olds, they have to be carefully taught.

Not a New York State of Mind

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Image from Columbia Journalism Review post “Beyond the Parachute: Newsrooms rethink centralized model” Feb 26, 2017, Jean Friedman-Rudovsky

Geographic diversity is connected to something crucial re what journalists need: audience trust in their work. The Columbia Journalism Review takes a hard look at how coastal newsrooms ignore middle america in this article.

When reporters “parachute in” to cover a story, they are likely to miss the nuances.

“Often people outside of these major city bubbles see themselves depicted in print and on television in a sensationalized way, without any nuance,” says a journalist who lives in South Carolina.“The thought is ‘well, if they’re getting depictions of us wrong, what else are they getting wrong?’

We in Princeton recognize that everybody thinks New York is better.Where do we go when we are really sick? What newspaper do we need when we really want the truth? Here is the Saul Steinberg cartoon about that self-effacing city, followed by two journal items inveighing against New York-centric viewpoints.

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Saul Steinberg “Ninth Avenue” cover for the New Yorker, March 29, 1976

 Journal item #1 : I lived outside the New York sphere when I worked as a freelance dance writer in Philadelphia and then Pittsburgh. For dance critics, even those big cities are considered boondocks.  A New York critic’s move to Philadelphia drew condolence letters.

To survive, vampires need blood; dance critics need to see and review dance, and New York is the best place to do it.

Back then, to qualify as a voting member of the Dance Critics Association, you had to have had a review published in a print newspaper during the previous year. Features (advance stories based on a critic’s experience with previous performances) didn’t count.

Fine for New Yorkers and big city papers, but in the boondocks, few newspapers would print reviews. I brought this up so often that I got to be known, somewhat affectionately, as the “lady from Philadelphia” even when I lived in Pittsburgh.

Journal item #2: Reporters treasure good sources. Reporters from small papers — from areas unknown to the “big city guys” — particularly treasure sources that respond with the same attention and respect that they might give to a Washington Post or New York Times reporter.

How I ran across this CJR story was because I follow the path of a former assistant managing editor of the Wall Street Journal, Richard Tofel, who always made himself available when I was a reporter at U.S. 1 Newspaper. (We weren’t a boondocks paper — we delivered to the Dow Jones building on Route 1 North, but it was still gratifying to always get a return call.)

Tofel is now president of the Pulitzer Prize-wining nonprofit newsroom, ProPublica. It’s expanding to Chicago. Not exactly the boondocks, but at least it’s not New York. ProPublica offers a new model for investigative journalism. Whether that comes from New York or the boondocks, we need that now.

To Pro Publica, you can contribute information. You can also contribute money.  And if you care about the future of journalism, subscribe to the Columbia Journalism Review. 

 

 

 

 

 

They sold a thousand tickets —

— to the Estonian Philharmonic Chamber Choir tonight.’

estonianIt’s in the Princeton University Concert series usually held in Alexander Hall, but, ever-so-appropriately, the venue for the choir is the Princeton University Chapel.

After years of enjoying Janell Byrne’s choreography to the work of Arvo Part “the uncrowned king of Estonian music,” I’m looking forward to hearing his choral work in that Gothic cathedral space.

Here is the program.

Though the ‘regular’ tickets are sold out, there are ‘obstructed view’ seats available and who cares about the view? But the snow will discourage some, and concert series director Marna Seltzer suggests “likely you will be able to move to a better seat.”

With its riches of Westminster Choir College and the American Boychoir, Princeton is a singer’s town. Next weekend we’ll welcome 800 singers from all over the world for a choral festival, “Sing ‘n Joy Princeton.” Trinity Church hosts a “Friendship Concert”  on Friday night, February 17, and Princeton United Methodist Church hosts a concert on Sunday, February 19, at 3 p.m. It’s free!

3 p.m.  – Friendship Concert – Princeton United Methodist Church
• ChildrenSong of New Jersey (Haddonfield, NJ, USA)
• Paduan Suara El-Shaddai Universitas Sumatera Utara (Sumatera Utara, Indonesia)
• Liberty North High School Choir (Liberty, MO, USA)
• Shanghai Jiao Tong University Choir (Shanghai, China)
• Vassar College Majors (Poughkeepsie, NY, USA)

Take part in the joy!

 

Share your medical news – and learn

A friend wrote to me, jubilant, because her husband – diagnosed with a prostate problem — had researched and found a state of the art therapy “green light laser prostate therapy.” it worked wonderfully, she says. Apparently it is not available here in Princeton.

I urged her to try to share this news with others through a social media strategy, participatory medicine. Read about it here on medium. If you can’t get into the medium site, try this one. 

For the experts — what participatory medicine platform would be best for prostate therapy recommendations?

Richard K. Rein: Princeton newspapers

drive-papers-2-534x462Here’s Rein’s indepth account, admittedly from his point of view, of the history of newspapers in Princeton, including his own. It’s published in his monthly paper for Princeton, the Echo, and on the website of Mercerspace. Confused? Read the post.

I tagged it “Memoir” because I lived through it too.

“I am not your Negro’

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I Am  Not Your Negro , an Academy Award-nominated film by Raoul Peck, is an up-to-the-minute examination of race in America through the eyes of James Baldwin. It will be in some theaters on February 3. The trailer  reveals it to be a succinct and powerful summary of a time that some of us lived through but did not experience.

The Garden Theatre notes that major cities get it first, but that it will come here “by the end of the month.” What a great resource!