Marketplace - American Public Media

Syndicate content
Updated: 55 min 29 sec ago

Time Warner considers buying a stake in bad boy media

Tue, 2014-06-10 02:00

On Monday, Time Warner spun off its namesake, Time magazine. Now, it is reportedly considering buying a stake in Vice Media.

It is safe to say Time’s founder, Henry Luce, wouldn’t have known what to make of Vice. First, it was an outsider magazine, published in Montreal; today, it is a global news empire.

“It is bad-boy media,” says Rebecca Lieb, an analyst with The Altimeter Group. “It is sex and drugs, and rock and roll, and going to far-flung corners of the earth in wildly irreverent ways.”

Surprise! That’s pretty popular.

“They have really hit the sweet spot for reaching perhaps the most elusive audience in media – the 18-35-year-old male audience,” Lieb says.

According to Tony Wible, a senior analyst with Janney Capital Markets, Vice has embraced new media, and it is making money.

“I think Time Warner is focused around TV and movies, and I think that anything that may complement that they may look at,” he says.

If this deal goes forward, analysts say, it will be interesting to see what effect, if any, being owned by a big media giant could have on Vice.

Time considering buying a stake in bad boy media

Tue, 2014-06-10 02:00

On Monday, Time Warner spun off its namesake, Time magazine. Now, it is reportedly considering buying a stake in Vice Media.

It is safe to say Time’s founder, Henry Luce, wouldn’t have known what to make of Vice. First, it was an outsider magazine, published in Montreal; today, it is a global news empire.

“It is bad-boy media,” says Rebecca Lieb, an analyst with The Altimeter Group. “It is sex and drugs, and rock and roll, and going to far-flung corners of the earth in wildly irreverent ways.”

Surprise! That’s pretty popular.

“They have really hit the sweet spot for reaching perhaps the most elusive audience in media – the 18-35-year-old male audience,” Lieb says.

According to Tony Wible, a senior analyst with Janney Capital Markets, Vice has embraced new media, and it is making money.

“I think Time Warner is focused around TV and movies, and I think that anything that may complement that they may look at,” he says.

If this deal goes forward, analysts say, it will be interesting to see what effect, if any, being owned by a big media giant could have on Vice.

'Greening' construction jobs for energy efficiency

Tue, 2014-06-10 02:00

When politicians talk about the future of employment and how to get the American economy back on track, there is one phrase that will inevitably flow from their lips: "Green jobs." But what exactly is a green job and where does it come from?

California is a good place to find the answer -- it has some of the most ambitious energy conservation goals in the nation. State building codes will require all new residential and commercial construction be zero net energy by 2030. That means every building will have to produce as much energy as it consumes.

To accomplish that, lots of construction workers will be needed.

“They are not, quote-unquote, green jobs. They are just ordinary professional and blue collar work in the building and construction industry,” says Dr. Carol Zabin, chairman of the Don Vial Center for Employment in the Green Economy. Zabin thinks a better way to describe this transition is the "greening" of existing jobs, not the creation of entirely new kinds of jobs.

For example, one of the key technologies needed to achieve California’s energy conservation goals is advanced lighting controls.

“A typical building will save anywhere from 50 to 80 percent of current energy by just controlling the lighting and using it when they need it, have the right amount of light,” said Doug Avery, an expert in lighting controls.

You are probably familiar with advanced lighting controls if you ever walked into a bathroom and the lights automatically came on. Or maybe they didn’t. When advanced lighting isn’t installed properly, building owners often override the systems, which compromises energy savings.

To ensure that electricians install these systems properly, a statewide initiative called the California Advanced Lighting Control Training Program,  or CALCTP, was created.

Inside a warehouse-sized classroom at the Electrical Training Institute of Southern California, certified electricians are working in groups of two, installing miniature lighting systems on pegboards. Fernando Martin and Mary Nagler were working together at one of the boards. They both said they're starting to see more of these types of lighting control systems in the field.  “As long as you are fairly experienced with this type of thing it's not that bad. But it definitely requires a class, if not some studying on your own part,” said Martin.

Tim Rainey, executive director of the California Workforce Investment Board, says demand for these skilled workers will rise significantly as older utility and construction workers retire over the next five to ten years, leaving big skill gaps in every industry, but especially in the utilities sector. "In fact two out of every three job openings will be because of retirement -- what we call replacements,” said Rainey.

Replacing those skilled workers is a big challenge, Rainey added, “but it’s also a big opportunity.”

That college essay on Proust could land you a job

Tue, 2014-06-10 02:00

Katie Jacobson recently finished college at the University of Minnesota-Morris and is ready to punch in at her dream job. Where exactly? And doing what? She's not sure.

"Ideally I'd like to have the power big-kid job. I want to dress to impress. I would like to have a cool office. I'd like to earn the big bucks," Jacobson says.

For help, she turned to the job search site Collegefeed. It's a free service that helps young people spin their college experiences into something that sounds more like work experience. That type of help separates Collegefeed from rivals job sites like LinkedIn, where users create their own profiles.

Jacobson has a profile up on the Collegefeed site that lists her accomplishments, like triple majoring in economics, management, and Spanish.

On a conference call with Kathy Cardozo, vice president of client engagement with Collegefeed, Jacobson learned that the draft version of her profile lacked focus.

"A hiring manager or recruiter would have a hard time figuring out what you want to do," Cardozo tells Jacobson.

Cardozo explains that Jacobson needs to play up the promotions she got working for the school's office of residential life, where she eventually became a hall director.

"You will show career trajectory-- meaning, you took on one role and you did so well that they hired you in the next role," Cardozo says.

Most graduates don't have a network. That's where Collegefeed steps in as matchmaker. It has 1,000 firms that pay to be in its database, including big names like Cisco Systems and eBay. Companies pay an average of a $1,500 per quarter to get a "feed" of candidates.

Though, Collegefeed, which is about a year old, has yet to turn a profit.

HR expert Jason Averbook of the consulting firm Appirio says droves of baby boomers will retire in the coming years. He says they'll need help finding replacement workers. So he thinks it makes sense for job search sites to specialize in the college grad demographic.

"We're going to have many new entrants into the workplace, and because of that, both businesses and these college graduates need tools to help them move forward," he says.

Demand does appear to be rising for the young workers in the Collegefeed markets. According to unpublished data from the Bureau of Labor Statistic's annual survey of recent college graduates, the unemployment rate for new college grads was 11 percent in October, its lowest level since 2007.

 

 

Obama, Tumblr, and student debt

Tue, 2014-06-10 01:00

On Monday, President Barack Obama signed an executive order that will help up to 5 million people pay off their student loans. He also pushed congress to lower borrowing costs for college kids.

Now, he's taking to Tumblr for the first time, to talk education.

It’s another chance for him to shine a light on the unsustainable cost of college.

It's also another chance to point out how comfortable he is with social media.

President Obama has participated in an Ask Me Anything on Reddit, a town hall meeting on Twitter, and even the online faux talk show “Between Two Ferns” to plug the Affordable Care Act.

“I wouldn’t give him an A on all the things in his presidency,” says Dave Kerpen, social media expert and cofounder of Likeable Media. “But on social media, I’d actually give the president an A.”

Tumblr, say experts, is exactly the right place to talk school costs. “It’s most popular with people under the age of 30,” said Mark Schafer, author of “Social Media Explained.”

It’s a direct line to a generation facing a trillion dollars in student debt, not to mention an indirect line to congress to put the pressure on.

Data on our data: 250,000,000 email address books

Tue, 2014-06-10 01:00

This month marks the first anniversary of the Edward Snowden leaks that changed our understanding of online privacy. Just like the subject matter of the leaks, the reporting over the last year has offered a deluge of information. So this week, we're posting a short series about all that data. Every day we'll bring you another number that reminds us how much we have learned in the last year about online surveillance and the reach of the NSA.

250,000,000

email address books

Stephen Cobb, *Senior Security Researcher at ESET says that during a single day in 2012, the NSA's Special Source Operations branch copied a ton of users' online address books and all the data therein, including names, phone numbers, addresses, and added notes. The exact breakdown?444,743 e-mail address books from Yahoo, 105,068 from Hotmail, 82,857 from Facebook, 33,697 from Gmail and 22,881 from other providers. The data is often succeptible to interception when a user logs on, composes a message, or synchronizes a computer or mobile device with information stored on remote servers. Cobb says you can get a really good picture of a person's activity and social network from an address book. And that should raise some alarms.

*CORRECTION: The original version of this story incorrectly identified Stephen Cobb. Cobb is a Senior Security Researcher at ESET. The text has been corrected.

Can Radio Shack fix it?

Tue, 2014-06-10 01:00

Ever dropped your phone or tablet? Cracked a screen? RadioShack wants to help. It’s launching a nationwide repair program this week it calls "Fix It Here."

RadioShack says that customers can bring an injured iPhone or Samsung Galaxy into a store and it’ll be fixed right there. Repair prices start at $79.99. 

“I think it’s pretty cool,” says Samuel Gibbs as he leaves a RadioShack store in downtown Washington DC. 

He says his girlfriend recently dropped her phone. They didn’t even think about getting it repaired.

“She ended up having to get a new one, which cost us about $250 I think, so it would have been nice to have had a replaced screen instead,” he says.

Radio Shack may be onto something. More consumers are having to buy their own phones, so more may be interested in repairing them when they break. It doesn't change the fact that Radio Shack has been struggling for years. Will "Fix It Now" fix RadioShack? 

Not unless the chain makes other changes, says Harry Wang, director of mobile research at Parks Associates: "They either have to beef up their online program or try to find some really unique kind of merchandise to survive.”

Wang says RadioShack will also have to contend with competition as manufacturers and other big retail chains start their own repair programs.

Obama, Tumblr, and student debt

Tue, 2014-06-10 01:00

On Monday, President Barack Obama signed an executive order that will help up to 5 million people pay off their student loans. He also pushed congress to lower borrowing costs for college kids.

Now, he's taking to Tumblr for the first time, to talk education.

It’s another chance for him to shine a light on the unsustainable cost of college.

It's also another chance to point out how comfortable he is with social media.

President Obama has participated in an Ask Me Anything on Reddit, a town hall meeting on Twitter, and even the online faux talk show “Between Two Ferns” to plug the Affordable Care Act.

“I wouldn’t give him an A on all the things in his presidency,” says Dave Kerpen, social media expert and cofounder of Likeable Media. “But on social media, I’d actually give the president an A.”

Tumblr, say experts, is exactly the right place to talk school costs. “It’s most popular with people under the age of 30,” said Mark Schafer, author of “Social Media Explained.”

It’s a direct line to a generation facing a trillion dollars in student debt, not to mention an indirect line to congress to put the pressure on.

The difference between debt and deficit: An explainer

Tue, 2014-06-10 00:34

A lot of people confuse the words debt and deficit. They're not quite the same, although they are related.

It's pretty simple, though. If you spend more money than you make, that's a deficit. And if you run a deficit, you have a choice: you can either borrow money and go into debt, or you can go bust, or default.

Debt itself isn't necessarily bad. Debt can help you grow – you may not be able to get an education without a student loan, for example. And just because you have some debt doesn't necessarily mean you're running a deficit. So long as you make enough money to pay the interest on the loan without going into more debt, you're in good shape. You may even be running a surplus, which is when you make more money than you spend.

The one thing you don't want to do, as a homeowner, is to use debt to run a deficit. In other words, you don't want to get into a situation where you're spending more money than you make, and you're making up the difference by borrowing.

But that's what a lot of Americans do. And they do it by using credit card debt. The Federal Reserve's latest figures say American household debt is now $13 trillion, and the average U.S. household credit card debt stands at $15,191.

Borrowing money to keep your financial head above water is a bad idea to begin with, but using the most expensive kind of debt is insane. And credit card debt is, without a doubt, the most expensive kind of debt that's out there.

For a household, then, running a deficit is, generally, a bad idea, particularly if you're using credit card debt to stay afloat.

But what about a country? The U.S. has a roughly $17 trillion debt load. And our government spends $306.4 billion more than it earns. And we make up for that $47.2 billion deficit by borrowing even more!

The fact is that when countries borrow to make up a deficit, they generally don't have to resort to the most expensive debt out there. And in the case of the U.S. government, it's the reverse: the U.S. is able to borrow at the cheapest rate anywhere.

But just because we can run a deficit cheaply doesn't mean we should, does it?

That depends on your points of view. An economy like the U.S. is far more complicated than a household. It has many more variables, and is infinitely more complex. To ensure the economy didn't run at a deficit, the country's leaders would need a big insurance plan to deal with any variables that required more money than they expected.

That would mean having a large reserve, and running a big surplus. That, in turn, would mean keeping that money out of circulation, which would inevitably crimp growth – perhaps a smart plan for a household, but not a healthy strategy for an economy.

Contemplating the short suit

Mon, 2014-06-09 13:52

Not for the first time, I am thanking my lucky stars that I'm in radio, and that, therefore, you all can't see what I'm wearing.

Because apparently there's a new thing in mens fashion this year: A short suit. Not a suit that's cut a little bit short, but a suit in which the pants are actually shorts.

Bermuda shorts, to be sure, but still... above the knee.

J. Crew thinks people are going to pay $358 for something called "the Ludlow short suit in rope stripe Italian wool-linen."

 

For those of you who have said that yes, you would wear shorts with a suit -- and there were more than a couple of you -- it's time to put up or shut up.

Tweet us a picture @Marketplace... or it didn't happen.  

Are there more of you? MT @AndrewConte: Thanks @kairyssdal, @Marketplace and @jcrew Saving up for #ShortSuit. pic.twitter.com/nqwfPMnwVq

— Marketplace (@Marketplace) June 10, 2014

At $18 billion, Uber isn't just competing with taxis

Mon, 2014-06-09 13:52

The latest venture-capital investment in Uber, a mobile app that allows users to hail a ride in a town car or taxi, pegs the company’s value at more than $18 billion. That's more than United Airlines or Sony, just shy of what car-rental Avis and Hertz are worth together. That may seem high for a company with direct competition like Lyft, Sidecar and the entire taxi industry.

For Uber to be worth what investors are betting, the company might need to capture half of the worldwide market for taxis, says Andy Brennan, author of a recent report on that industry from IBIS World Research.  “I can’t see that ever happening,” he says. “Generally taxi customers are quite price-conscious.”

A ride in one of Uber’s town cars costs more than a cab. “The average person who gets a taxi is not necessarily going to use Uber on a regular basis,” Brennan says.

However, competing with taxis isn’t Uber’s goal. The company’s CEO has identified a much bigger competitor: The personal automobile.

The idea of Americans parting with their cars may sound wild, but younger people may not feel as strong of an urge to own one. “Someone who’s 20-years-old today may be much less concerned with whether their car expresses their personality than with whether their phone or their tablet expresses their personality,” says analyst James McQuivey of Forrester Research.

He sees a future where people could subscribe to Uber like a service. Uber cars—with robot drivers, of course--may deliver their packages, or shlep their kids to piano lessons.

Ultimately, Uber may not just replace a taxi, or a car, but something that hasn’t even been invented yet. “We’ve all been waiting for that personal helicopter, that personal jetpack,” McQuivey says. “But really, you don’t need to move around as much as the stuff in your life needs to move around. And someone will help you do that much more efficiently than waiting for that jetpack.”

Maybe a company with that market is worth at least $18 billion dollars -- because the competition in that scenario is something like Amazon— currently valued at about $150 billion.

Why the celeb mag market is still worth something

Mon, 2014-06-09 13:51

We've heard again and again that the magazine industry is dying as readers increasingly turn to websites for news and gossip. So, expect a tough road ahead for Time Inc. which has split from its parent company, Time Warner, the owner of money-makers like Warner Bros Studios and HBO.

And while Time's prospects as a magazine company may look grim, Time has something of a trump card in the celebrity magazine, "People." It is Time's top title. Although sales of People have dropped off in the past decade, the magazine, with its mix of celebrity news and human interest stories, still has a weekly circulation of around 3.5 million readers, nothing to sniff at in an age of shrinking readership. 

By Shea Huffman

Another plan to ease the student-loan burden

Mon, 2014-06-09 13:49

President Obama made an announcement Monday about a popular subject. Or unpopular really: student loans. Under the new plan, if you took out a student loan before 2007, you may be able to cap your loan payments at 10 percent of your discretionary income. That'll add millions more students to a pay-as-you go plan that was passed in 2012.

“This might impact, oh, maybe five million borrowers, but there are 40 million people who have federal student loans,” says Richard Vedder, director of the Center for College Affordability and Productivity. Then, he says, there’s the trillion dollars in outstanding student debt, in which  the latest plan will barely make a dent.

Borrowers may see things differently. 

“It could provide for some people, perhaps $50 or $100 a month of relief, which is, for a low income person, is material," he says.

The plan expands an earlier one and will now include students who took out loans as far back as 2007.  It  will also allow borrowers to apply for forgiveness after 20 years of payments.

But it doesn't apply to private loans, says Terry Hartle, senior vice president for the American Council on Education. 

The mount of money that people can borrow for an undergrad education from the federal government has not changed all that much in recent years, and the increase that we’ve seen in borrowing is in part attributable to the large number of private lenders,” he said.

Even so,  Hartle says he's in favor of the new plan. But Vedder says there's a more fundamental problem. The new plan, he says, is "dealing with symptoms, not the disease -- rising tuition fees. 

"What the president is proposing," says Vedders, "might be some help to past borrows,  but it’s going to do nothing to deal with the problem in the future."

Data on our data: 5 billion location records every day

Mon, 2014-06-09 11:46

This month marks the first anniversary of the Edward Snowden leaks that changed our understanding of online privacy. Just like the subject matter of the leaks, the reporting over the last year has offered a deluge of information. So this week, we're posting a short series about all that data. Every day we'll bring you another number that reminds us how much we have learned in the last year about online surveillance and the reach of the NSA.

5,000,000,000

location records every day

According to documents leaked by Edward Snowden, The National Security Agency collects nearly 5 billion location records every day from cellphones around the world. That data comes from mobile devices communicating with nearby cell towers, and the NSA uses it to look for patterns of movement that could link people to known terrorists.

Ashkan Soltani, an independent security researcher who has been working with the Washington Post to report on the leaks, calls this a "big data" approach to surveillance. "The majority of those 5 billion records are going to be innocent people's movements," Soltani says. "And those are still being collected and analyzed by the NSA, and I think that's going to be shocking to most people."

How do restaurants set their buffet prices?

Mon, 2014-06-09 11:13

One of the questions we received from listeners as part of our “I’ve Always Wondered” series is about buffets.  Mike Glatzer wrote to ask:

1)      How do buffets figure out the price to charge customers, in order to still make a profit?

2)      Do they know the average amount that each customer eats?

 Turns out, there’s a careful science to it.

Generally, restaurants figure you’ll eat about a pound of food.  To decide how much to charge, they take the average number of buffet customers per day and divide that into their daily buffet food cost. Then they know their average cost per person. 

But it doesn’t end there, because restaurants only stay in business when they’re making a profit. So restaurants put the cheapest, most filling food at the beginning of the buffet line.

“So we have potatoes au gratin at the beginning,” says Donetta Poisson, who teaches food service management at Georgia State University. “It’s cheese and potatoes but people generally love that.”

Poisson says buffets also use big spoons for those dishes.  The most expensive food is served on small platters. Or carved, one stingy slice at a time.

But fear not buffet fans. There are plenty of tricks you can do.

Mike Glatzer, who wrote in to ask the question about buffets, is actually something of an experienced buffet eater.  And when we met at an all-you-can-eat pizza buffet in Silver Spring, Md., he gave me some tips. Marketplace is pleased to present:

  • Don’t  starve yourself ahead of time.  If you’re going to a lunch buffet, eat a small breakfast. Otherwise, your stomach will shrink and you won’t be able to eat as much. 
  • Don’t get to the buffet right when it opens.  “If you show up when it first opens, they haven’t put out a lot of the best dishes,” Mike says. “They’re still preparing them or they’re saving them for, I guess, when they have the majority of the crowd.”
  • No fizzy drinks. The fizz will make you feel full.
  • Don’t eat the really salty stuff, like French fries. They’ll make you thirsty, and you’ll drink more. Whatever you’re drinking, it’ll fill you up.
  • Don’t be too adventurous.  You don’t want to get full on stuff you’re just trying. Fill up on the food you love, Mike says.
  • Save the cheap, starchy stuff for the end.  Don’t be fooled into loading up on it at the beginning of the buffet.
  • At a pizza buffet, don’t eat the crust. As Mike says, “The crust is just consuming real estate in my stomach that could be used for better purposes.”
  • No breaks. Your stomach will have time to realize it’s full. Mike says, “If you’re stuffing your face, it takes your body a while to realize how much you’ve consumed.”
  • Save a round or two for dessert. On the first round, Mike says, try a little bit of everything.  Decide on your favorites.  Then, “Go back for a second round, and that’s where you really hit them hard.”

For sufferers of rare diseases, options are rare too

Mon, 2014-06-09 10:35

Doctors have to swear a Hippocratic oath, as you probably know. It’s a promise to do everything required to help the sick. The economy doesn’t have to swear any such oath. So, what do you do when your disease or illness is so rare that few people have financial reason or resources to cure it?  

When Donna Appel’s daughter Ashley was just a year old and learning how to walk, Appel noticed she was bruising a lot. 

“So I brought her to the pediatrician and they said that because her skin is fair, you just see bruises more. I never really understood that,” she recalls.

Ashley kept getting bruises, but nobody thought there was anything majorly wrong. Appell says she felt like a crazy person. That is, until one night when Ashley was three. 

“Three oclock in the morning I heard her whimpering in her crib. I went in and her crib was full of blood.  She was in and out of consciousness, we rushed her to the hospital. She was there for three months,” Appell recounts.   

Ashley had bled so much she had suffered traumatic brain injury.

She had what’s called Hermansky Pudlak syndrome, a rare congenital syndrome caused by genetic mutations that interfere with the body’s ability to break down unwanted cells and material. Because it affects such basic cellular machinery, it has a lot of symptoms.

To be more specific: “Albinism of the eyes and of the skin, a platelet disorder that causes bleeding, a lung complication called pulmonary fibrosis, and that’s a fatal illness,” says Dr. Samuel Seward, Ashley’s primary physician and perhaps one of the only doctors in the country whose practice focuses on HPS patients.

These and other complications kept Ashley Appell in the hospital for much of her childhood.

“I grew up there,” she recounts in a husky, yet still delicate voice. “A lot of the doctors and nurses raised me there. And because of the traumatic brain injury, I had different specialists come to the hospital, and they would have to catch me up with school.”

The disease is incredibly rare -- Just one to two people in a million get it. That’s why Ashley’s doctors had trouble identifying her illness, as people didn’t even know specifically what caused it yet. “There was no treatment out there, there was no gathered data. We felt terribly isolated,” Ashley’s mother remembers.  

The hard reality that the Appells were facing was that no pharmaceutical company thinks it’s going to make billions of dollars off of a disease that affects just a handful of people. In fact, not many researchers had ever heard of Ashley's disease. 

There are government incentives for companies to devote resources to rare diseases, such as the FDA’s Rare Diseases Program. There are also niche companies that don’t need to make billions of dollars. But the quantity of research, attention, and resources is hardly comparable to those devoted to, say, cancer.    

“For those with rare diseases there are obviously additional difficulties,” says Terri Hinkley, Executive Director of the Association of Clinical Research Professionals. “It’s normally a smaller patient population, there may not be the number of pharmaceutical or biotech companies interested in products for these diseases.”

And clinical trials – which are needed both for new drugs and new applications for old drugs – are expensive.  

“There are many different types and phases of clinical trials and research but individually each will cost potentially millions of dollars. The cost to bring one drug to market can be upward of $10 million.”

The Appells didn’t have that. But they did have something else. Numbers.

“Really who’s gonna care about one person,” she says. “I just had this feeling like we needed to create a mob.”  

And that is exactly what she did.  She formed what would eventually become the Hermansky-Pudlak Syndrome Network.  She enlisted her first member by getting in the audience for the Sallie Jesse Raphael show -- Someone contacted her when she made an impassioned plea from the audience. At first it was just two families, then three, then dozens.

Eventually, they would hold conferences to discuss research, meetings where sufferers of HPS would trade makeup tips, and outreach events among New York’s Puerto Rican community, among whom HPS is significantly more prevalent.

While  drug companies may need dollars, researchers often need subjects.  Donna Appell started cold calling scientists. “I told them I had these families and we needed research.”

One of those researchers was Bill Gahl, clinical director of the National Human Genome Research Institute* at the National Institutes of Health. 

“I would not be studying HPS if it weren’t for Donna Appell,” he says.  The early individuals of her group “served as a substrate” for research into the causes of the disease.

“We actually collected 24 hour urine buckets from families with HPS,” recalls Appell. “ We had to do it in the winter cause they all had to be refrigerated so we put them all out on the snow on our deck. I gave awards for the heaviest urine bucket, and a funnel to the family that handed in the lightest urine bucket.”

What Appell didn’t have in money, she made up for with the old Razzle Dazzle.  The families sent cards, they put on performances for the researchers.  And they focused on marketing.

“How are we gonna get people to be interested in Hermansky Pudlak Syndrome – I mean even the name of it!” Appell recalls.

So they do what companies do and went out and trademarked a brand. “One of our members came up with a slogan ‘Dare to be Rare’.”

They’ve put it on mugs and other merchandise.  The idea is to get a brand that people like even if they have no idea what the disease is.    “Look at Boston Strong and Life is Good,” says Appell, referring to branded themes put to charitable or commercial use.

Between the urine buckets and the fundraising, researchers were eventually able to figure out the genetic mutations that caused HPS, and even run a few clinical trials through the NIH.

“I can’t highilght enough the significant power that these patient advocacy groups have,” says Hinkley with the Association of Clinical Research Professionals. “Their expertise in their disease and the resources and networks they have available to them have become invaluable to the clinical research industry.”

Researchers and drug companies are slowly realizing that studying rare diseases can improve understanding of less rare but more lucrative diseases. “If you study the rare it will lead to the common. There is so much we can learn and generalize,” says Hinkley. 

But Dr. Samuel Seward, Ashley’s primary care doctor, says not enough diseases are approached this way. “Nationally and internationally there does need to be a paradigm shift,” he says. By focusing research on cellular mechanisms or symptoms that rare and prevalent diseases hold in common, everybody wins. “In the sum total, rare diseases are much more common than people want to assume they are,” says Seward. "People like to think about the really common disease – Alzheimers, coronary artery disease, high blood pressure, diabetes. But when you think of the whole spectrum of human illness, rare diseases are important too and people are dying every day of rare diseases and every year of HPS, and we need to think more broadly about how we spend our research dollars.”

*CORRECTION: An earlier version of this story incorrectly identified the National Human Genome Research Institute. The text has been corrected.

 

Slow down, or blow up. 'Speed' turns 20.

Mon, 2014-06-09 10:24

From the Marketplace Datebook, here's a look at what's coming up Tuesday, June 10:

In Washington, the Commerce Department reports on wholesale inventories and sales and the Labor Department issues its job openings and labor turnover survey for April.

It's the 79th anniversary of Doctor Bob and Bill W. founding Alcoholics Anonymous.

A House subcommittee on the Constitution and Civil Justice discusses the state of religious liberty in the U.S.

A House Foreign Affairs subcommittee examines reconstruction efforts in Afghanistan.

And remember that action film with the bus that would blow up if it didn't maintain 50 mph on Los Angeles' freeways? "Speed" was released 20 years ago.

Marketplace Weekend: What we're working on

Mon, 2014-06-09 10:17

If you haven't heard, Marketplace Money is transitioning to Marketplace Weekend. As a special thank you to our newsletter readers, we’re inviting you to give some of our new radio segments on early listen. Let us know what you think!

Tech IRL

Marketplace Weekend host Lizzie O'Leary and Marketplace Tech host Ben Johnson explore the digital world in real life. Listeners get deeper insight into how technology is changing the world around then, beyond smartphones and laptops.

In this edition, Ben and Lizzie look at New York City's plan to convert old public payphone stalls into wi-fi hotspots.

The Number

You might hear Marketplace cover "The Numbers" during the week, looking at the daily state of the stock market. For Marketplace Weekend, we meet the people behind the news, on 'Main Street' instead of 'Wall Street,' and what number is impacting them.

This number? Three, for three percent. As much as three percent of Ukraine's GDP comes from money earned overseas and sent back home. The World Bank says that per capita income in Ukraine is about $3500 in U.S. dollars, so all that extra money can be a big boost. It's common for Ukrainians around the world to send money back to their families and friends.

Is that changing?

My Money Story

There's a moment when money changes lives, either by gaining it, losing it, never having it.

This time, writer Brian Finkelstein shares a story about art and earning, and learning what actually makes you happy. 

Thanks for listening.

Help us build Marketplace Weekend. Here’s how:

Mon, 2014-06-09 09:10

Hi everyone,

I’ve been off working with the Marketplace team, creating a brand new show. Starting the weekend of June 28th, Marketplace Money becomes Marketplace Weekend.

Our mission is simple: Marketplace Weekend will connect you to the world of money.

What does that mean? We’re going to explore all parts of our economic world. What's happening here, around the world, in your wallet and in your life. My philosophy is that money is a prism through which we see ourselves. The choices we make – or have to make – with it, tell us about who we are as individuals, families, countries, societies.

But the show is not just about what I think. It’s a dialogue. In addition to the radio show, we’re also hosting online conversations about what’s happening in the world, and we want those conversations to start with you. What we learn online will be a key part of building the radio show. We want to incorporate your thoughts and your voices.

I’m inviting you to be a charter member of our Marketplace Weekend community. We want your help in building our conversations and testing our new website. Throughout the week, the Marketplace Weekend team will share our thoughts and takes on some of the issues we’re all trying to work through. This week, we want to know, do you still call yourself middle class? What does middle class even mean in 2014?

Tell us what you think by visiting marketplace.org/money (the name stays until the relaunch). There, you’ll see buttons that let you write us, tell us and tweet us. Below those buttons, you can follow the conversation as it goes.

Thanks and I’ll see you online. Let’s chat.

Lizzie

ON THE AIR
BBC World Service
Next Up: @ 05:00 am
Democracy Now

KBBI is Powered by Active Listeners like You

As we celebrate 35 years of broadcasting, we look ahead to technology improvements and the changing landscape of public radio.

Support the voices, music, information, and ideas that add so much to your life.Thank you for supporting your local public radio station.

FOLLOW US

Drupal theme by pixeljets.com ver.1.4