Living With Cancer: Arrivals and Departures

After being nursed and handed over, the baby’s wails rise to a tremolo, but I am determined to give my exhausted daughter and son-in-law a respite on this wintry evening. Commiserating with the little guy’s discomfort — gas, indigestion, colic, ontological insecurity — I swaddle, burp, bink, then cradle him in my arms. I begin walking around the house, swinging and swaying while cooing in soothing cadences: “Yes, darling boy, another one bites the dust, another one bites the dust.”

I kid you not! How could such grim phrases spring from my lips into the newborn’s ears? Where did they come from?

I blame his mother and her best friend. They sang along as this song was played repeatedly at the skating rink to which I took them every other Saturday in their tweens. Why would an infatuated grandma croon a mordant lullaby, even if the adorable one happily can’t understand a single word? He’s still whimpering, twisting away from me, and understandably so.

Previously that day, I had called a woman in my cancer support group. I believe that she is dying. I do not know her very well. She has attended only two or three of our get-togethers where she described herself as a widow and a Christian.

On the phone, I did not want to violate the sanctity of her end time, but I did want her to know that she need not be alone, that I and other members of our group can “be there” for her. Her dying seems a rehearsal of my own. We have the same disease.

“How are you doing, Kim?” I asked.

“I’m tired. I sleep all the time,” she sighed, “and I can’t keep anything down.”

“Can you drink … water?” I asked.

“A little, but I tried a smoothie and it wouldn’t set right,” she said.

“I hope you are not in pain.”

“Oh no, but I’m sleeping all the time. And I can’t keep anything down.”

“Would you like a visit? Is there something I can do or bring?” I asked.

“Oh, I don’t think so, no thanks.”

“Well,” I paused before saying goodbye, “be well.”

Be well? I didn’t even add something like, “Be as well as you can be.” I was tongue-tied. This was the failure that troubles me tonight.

Why couldn’t I say that we will miss her, that I am sorry she is dying, that she has coped so well for so long, and that I hope she will now find peace? I could inform an infant in my arms of our inexorable mortality, but I could not speak or even intimate the “D” word to someone on her deathbed.

Although I have tried to communicate to my family how I feel about end-of-life care, can we always know what we will want? Perhaps at the end of my life I will not welcome visitors, either. For departing may require as much concentration as arriving. As I look down at the vulnerable bundle I am holding, I marvel that each and every one of us has managed to come in and will also have to manage to go out. The baby nestles, pursing his mouth around the pacifier. He gazes intently at my face with a sly gaze that drifts toward a lamp, turning speculative before lids lower in tremulous increments.

Slowing my jiggling to his faint sucking, I think that the philosopher Jacques Derrida’s meditation on death pertains to birth as well. Each of these events “names the very irreplaceability of absolute singularity.” Just as “no one can die in my place or in the place of the other,” no one can be born in this particular infant’s place. He embodies his irreplaceable and absolute singularity.

Perhaps we should gestate during endings, as we do during beginnings. Like hatchings, the dispatchings caused by cancer give people like Kim and me a final trimester, more or less, in which we can labor to forgive and be forgiven, to speak and hear vows of devotion from our intimates, to visit or not be visited by acquaintances.

Maybe we need a doula for dying, I reflect as melodious words surface, telling me what I have to do with the life left to be lived: “To love that well, which thou must leave ere long.”

“Oh little baby,” I then whisper: “Though I cannot tell who you will become and where I will be — you, dear heart, deliver me.”


Susan Gubar is a distinguished emerita professor of English at Indiana University and the author of “Memoir of a Debulked Woman,” which explores her experience with ovarian cancer.

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United takes Dreamliner off schedule until June
















All Nippon Dreamliner 787


The All Nippon Airways Dreamliner 787 arrives at Mineta San Jose International Airport.
(Gary Reyes/San Jose Mercury News/MCT / January 22, 2013)



























































The parent company of United Airlines says it is taking the Boeing 787 off its schedule through June 5 for all but one of its routes.


United Continental Holdings Inc. said it still plans to use the 787 on its flights between Denver and Tokyo's Narita airport starting May 12. It had aimed to start that route on March 31.


United, currently world's largest airline and the only U.S. customer for the 787, said the timing of that reinstatement will depend on resolution of the Dreamliner's current issues.





The 50 Dreamliners in commercial service were grounded worldwide last month after a series of battery-related incidents including a fire on board a parked plane in the United States and an in-flight problem on another jet in Japan. United had only been flying the plance since November.


Sources told Reuters earlier this week that Boeing Co. has found a way to fix the battery problems that involves increasing the space between the lithium ion battery cells.









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2 bodies found in home following East Chatham blaze
















 


 
(Tribune illustration)


























































Firefighters found two bodies at a South Side residence this afternoon while putting out a fire at the home, according to authorities.


The bodies were found about 4 p.m. as firefighters were extinguishing a fire in the 8100 block of South Maryland Avenue, according to Larry Langford, a Chicago Fire Department spokesman. 


A law enforcement source said they were found in a bathroom.





Langford said the investigation has been turned over to the Chicago Police.


chicagobreaking@tribune.com







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Strange but true stories from Academy Awards past






(Reuters) – The Academy Awards are usually tightly scripted events, but sometimes even Oscar gets a taste of the unexpected. Here are some of the curious moments when things veered off course on the red carpet.


REFUSING OSCAR






A few Oscar winners have felt compelled to turn down their prizes over the years. The first was screenwriter Dudley Nichols, who refused his Best Screenwriter award for “The Informer” in 1936 because of conflicts between the Screen Writers Guild and the Academy. Marlon Brando famously sent a proxy to refuse his 1972 Best Actor Oscar for “The Godfather” on his behalf (and to deliver a 15-page speech on Hollywood’s mistreatment of Native Americans while she was there).


The all-time greatest rejection, though, goes to George C. Scott, who denounced his Best Actor nomination for “Patton,” calling the awards “offensive, barbarous and innately corrupt.” Scott was quoted as calling the ceremonies “a two-hour meat parade, a public display with contrived suspense for economic reasons.” When he won the award, he was 3,000 miles away at home, watching a hockey game on TV. Brilliantly, Scott’s high moral tone was strangely absent when, two years later, he let it be known that if the Academy felt like nominating him for Best Director for “Rage,” he wouldn’t object. Unsurprisingly, they didn’t much feel like it.


Ten years later, Scott was so keen on the idea of an offensively barbarous two-hour meat parade that he bought last-minute tickets for the 1982 ceremony, and would have gotten away without incident had he not been spotted by a columnist from Variety and heckled on the red carpet.


A LONG WALK TO THE STAGE


Hattie McDaniel was the first African-American to win an Academy Award, for her portrayal of Mammy in the 1939 film “Gone With The Wind” – as mentioned by George Clooney in his 2006 “Isn’t Hollywood progressive?” Oscars speech. (https://www.youtube.com/watch?v=NqDbG9h-f7c ) What he didn’t mention was that, while the rest of the cast and crew of “Gone with the Wind” sat at a big table together, McDaniel and her companion were seated at a table for two in the back of the room, as the Ambassador Hotel was still segregated. And it was from all the way at the back of the room that she had to walk to accept her award with, one has to say, a very gracious speech under the circumstances. (http://www.youtube.com/watch?v=e7t4pTNZshA ) So, progressive, but not all that progressive, eh, George?


MINISKIRT BAN


In her 1967 classic “How to Dress for Success,” Oscar-winning designer Edith Head said, “Even the most beautiful legs – Marlene Dietrich’s, for instance – look better when the kneecap is covered.” To back up the sentiment, Head, who served as a special adviser to the Academy, banned miniskirts from the 40th Academy Awards in 1967, saving the nation from the indignity of knees it suffered in 1966 (like the shocking mid-leg areas of Inger Stevens: http://www.ingerstevens.org/images2.html – although to be fair, that IS more of a swimsuit than evening wear).


THE STREAKER


Daring to show a little more leg (and a lot more of everything else) than even the poor, oppressed miniskirt lovers of 1967 was Robert Opel, who in 1974 became the only person to have appeared naked onstage at the Oscars. (http://www.youtube.com/watch?v=2IIl3zSYL8k ) Sadly, he wasn’t a daring nominee, or even a presenter – just some guy who really liked being naked. “Isn’t it fascinating to think that probably the only laugh that man will ever get in his life is by stripping off his clothes and showing his shortcomings,” quipped David Niven, securing his place in dictionaries of hilarious quips forevermore. Of course, it was later suggested that the streak had been arranged by the producers to spice up a boring run of ceremonies, and that Niven has been seen to borrow a pencil to note down his spontaneous line before the show had even begun, but it’s far more fun to believe the opposite.


THERE’S NO HOSTING LIKE … WELL, NO HOSTING


There have been good hosts, bad hosts, really bad hosts and really, really bad hosts, but the all-time worst ceremony was one with no host. Few people who saw the 1989 awards show’s opening number – a duet between an actress playing Snow White and non-singer Rob Lowe – will ever forget it. … no matter how much they might want to, or how hard they might try. It wasn’t the first time the show had gone without a host; there was a three-year run in the late ’60s after Bob Hope’s tenure, when no one could follow his masterful act. But 1989 was the last time that happened.


BANNED!


After the Academy caught wind of Sasha Baron Cohen‘s plan to turn up dressed as his leading role in “The Dictator,” rumors flew in the weeks leading up to the 2012 Oscars that Baron Cohen would be barred from the ceremony. The Academy, however, said he had never been banned, just warned that the red carpet was no place for stunts. Apparently, Baron Cohen didn’t get the message; he arrived in full costume, carrying an urn containing, he said, the ashes of Kim Jong-il, which he then proceeded to spill over Ryan Seacrest before being escorted off the premises. Actual bans from the Oscars are harder to come by – but not impossible. Just ask Nicholas Chartier, who was reportedly the first nominee ever to fall that far afoul of Oscar, for sending an email to a group of people including Academy members encouraging them to support the film he produced (“The Hurt Locker”) and disparaging another nominated film. (http://articles.latimes.com/2010/mar/03/entertainment/la-et-chartier3-2010mar03 )


VALUE OF THE WORLD’S MOST FAMOUS STATUETTE: $ 1


Much to the disappointment of some faded stars, there’s no profit to be made from an old Oscar. Since 1950, the Academy has made every recipient of the little golden man sign a “winner’s agreement.” If you fall out of love with fame and one day wish to sell you statuette, you have to offer it to the Academy first for $ 1. That doesn’t mean that Oscars never surface in auctions – Steven Spielberg has spent more than $ 1.1 million on two used pre-winner’s-agreement Oscars – Clark Gable’s in 1996 and Bette Davis’ in 2001, in order to return them to the Academy. There’s nothing someone with a shelf of real Golden Men likes less than someone else trying to buy their way into the club.


THE SHIFTING STATUETTE


The modern award is 13.5 inches high, weighs 8.5 pounds (3.85 kilograms) and is made of gold-plated britannium, a pewter-like alloy, on a black metal base. But it has not always been so. Before World War Two, the base was stone; during the war, statuettes were made of plaster as a nod to the war effort (though winners could swap them for metal ones once the war was over).


Until the 1950s, child actors who won Oscars were given miniature statuettes. This was not because they were too tiny and weak to carry the big ones off the stage but because it was thought unfair to the adults that they would have to compete with kids.


When ventriloquist Edgar Bergen and his dummy Charlie McCarthy got an honorary Oscar in 1938, he was given a wooden Oscar statuette with a movable mouth.


AUSTERITY OSCARS


In 1944, as part of the war effort, the Academy took the 16th Academy Awards to Grauman’s Chinese Theater, the first time for the Oscars in a big public venue. Men and women in uniform were given free tickets for the ceremony, and in a show of solidarity some were given seats on the stage. However, as this video will attest, some of them did look a little bored. (http://www.youtube.com/watch?v=2bxTD6KWO5Y )


THE OSCARS’ OSCAR


The late Walt Disney currently holds the record for winning the most, with 26 awards given to him personally (22 Oscars, three Special Awards and the Irving G. Thalberg Memorial Award).


On the flip side, sound re-recording mixer – it’s a real job, apparently – Kevin O’Connell has been named the Oscar’s most unlucky nominee, having been nominated 20 times without winning.


Meanwhile, there has only ever been one Oscar to win an Oscar. Songwriter Oscar Hammerstein II, fittingly, won two.


(Reporting By Anna Pickard; Editing by Arlene Getz, Kathy Jones and Douglas Royalty)


Movies News Headlines – Yahoo! News





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Well: Effects of Bullying Last Into Adulthood, Study Finds

Victims of bullying at school, and bullies themselves, are more likely to experience psychiatric problems in childhood, studies have shown. Now researchers have found that elevated risk of psychiatric trouble extends into adulthood, sometimes even a decade after the intimidation has ended.

The new study, published in the journal JAMA Psychiatry on Wednesday, is the most comprehensive effort to date to establish the long-term consequences of childhood bullying, experts said.

“It documents the elevated risk across a wide range of mental health outcomes and over a long period of time,” said Catherine Bradshaw, an expert on bullying and a deputy director of the Center for the Prevention of Youth Violence at Johns Hopkins University, which was not involved in the study.

“The experience of bullying in childhood can have profound effects on mental health in adulthood, particularly among youths involved in bullying as both a perpetuator and a victim,” she added.

The study followed 1,420 subjects from Western North Carolina who were assessed four to six times between the ages of 9 and 16. Researchers asked both the children and their primary caregivers if they had been bullied or had bullied others in the three months before each assessment. Participants were divided into four groups: bullies, victims, bullies who also were victims, and children who were not exposed to bullying at all.

Participants were assessed again in young adulthood — at 19, 21 and between 24 and 26 — using structured diagnostic interviews.

Researchers found that victims of bullying in childhood were 4.3 times more likely to have an anxiety disorder as adults, compared to those with no history of bullying or being bullied.

Bullies who were also victims were particularly troubled: they were 14.5 times more likely to develop panic disorder as adults, compared to those who did not experience bullying, and 4.8 times more likely to experience depression. Men who were both bullies and victims were 18.5 times more likely to have had suicidal thoughts in adulthood, compared to the participants who had not been bullied or perpetuators. Their female counterparts were 26.7 times more likely to have developed agoraphobia, compared to children not exposed to bullying.

Bullies who were not victims of bullying were 4.1 times more likely to have antisocial personality disorder as adults than those never exposed to bullying in their youth.

The effects persisted even after the researchers accounted for pre-existing psychiatric problems or other factors that might have contributed to psychiatric disorders, like physical or sexual abuse, poverty and family instability.

“We were actually able to say being a victim of bullying is having an effect a decade later, above and beyond other psychiatric problems in childhood and other adversities,” said William E. Copeland, lead author of the study and an associate professor of psychiatry and behavioral sciences at Duke University Medical Center.

Bullying is not a harmless rite of passage, but inflicts lasting psychiatric damage on a par with certain family dysfunctions, Dr. Copeland said. “The pattern we are seeing is similar to patterns we see when a child is abused or maltreated or treated very harshly within the family setting,” he said.

One limitation of the study is that bullying was not analyzed for frequency, and the researchers’ assessment did not distinguish between interpersonal and overt bullying. It only addressed bullying at school, not in other settings.

Most of what experts know about the effects of bullying comes from observational studies, not studies of children followed over time.

Previous research from Finland, based on questionnaires completed on a single occasion or on military registries, used a sample of 2,540 boys to see if being a bully or a victim at 8 predicted a psychiatric disorder 10 to 15 years later. The researchers found frequent bully-victims were at particular risk of adverse long-term outcomes, specifically anxiety and antisocial personality disorders. Victims were at greater risk for anxiety disorders, while bullies were at increased risk for antisocial personality disorder.

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Office Depot to buy OfficeMax

Office Depot to buy Office Max as an attempt to compete with Staples.









Office Depot Inc. and Office Max Inc. have agreed to merge in a $1.17 billion stock transfer, the companies announced Wednesday, ending nearly two hours of confusion about whether a deal had been reached.


Officials at Naperville-based OfficeMax and Office Depot declined to say who would lead the combined company nor where it would be located when the "merger of equals" is completed, likely by the end of the year.

After some confusion early Wednesday, when a draft press release was posted prematurely on the website of Boca Raton, Fla.-based Office Depot's, both companies issued a joint statement at around 8:30 a.m. CT announcing the planned merger. 


The combined entity's name, headquarters and CEO are all undecided, creating an unusual level of uncertainty that points to the integration challenge the companies face.








"During the appropriated times ... our board will make the right decision,"  OfficeMax President and CEO Ravi Saligram said of the location and leadership of the combined firm. "Now we're independent companies and we've got to go through lots of processes," he said.

On a conference call with analysts, Office Depot CEO Neil Austrian apologized for the announcement mishap on Wednesday morning.  "Our webcast provider inadvertently released our earnings in advance of schedule," he said.  We regret any inconvenience that this may have caused." 

Saligram and Austrian emphasized that the combination, which will create a company that will do roughly $18 billion in revenue, is a merger of equals.

"This [merger] will create a stronger, more global, more efficient competitor able to meet the growing challenges a rapidly changing industry," said Saligram. 


While Office Depot insisted the deal was a merger of equals and not an acquisition, its shareholders will get the larger part of the combined company. CEOs of both companies and outside candidates are being considered for the top job.

When combined, OfficeMax and Office Depot, the world's second and third largest office products companies by revenue, will still not eclipse the segment's largest business, Staples Inc.

The pair had combined revenue of about $18.5 billion in the last fiscal year. They expect to save about $400 million to $600 million per year within three years through layoffs, streamlining of back-office functions and combined advertising. They didn't provide details on how many workers would lose their jobs or the fate of OfficeMax's Naperville headquarters.

After days of speculation that a deal was close, a draft of a press release announcing the news was posted prematurely on Office Depot's website early Wednesday morning. More than an hour after it came out, there was still no mention of the merger on either company's website nor on the SEC or other investor websites. Sources cited by the New York Times Wednesday morning said negotiations were ongoing.

Thomson Reuters Corporate Services, which operates various investor relations websites including Office Depot's, took responsibility for the early publication.


"Unfortunately, Thomson Reuters incorrectly posted this morning's announcement of Office Depot's intention to merge with Office Max prior to its intended release," Lemuel Brewster, PR director - investors at Thomson Reuters, said Wednesday afternoon in an email response to an inquiry. "We regret this error and are taking all steps necessary to enhance our processes and controls to ensure this does not happen again."


Office Depot will issue 2.69 new shares of common stock for each outstanding common share of OfficeMax. At Tuesday's closing prices, the deal is valued at $13.50 per share, or $1.17 billion, based on 86.7 million shares outstanding as of Oct. 26.

After the merger is completed, Office Depot's board will consist of an equal number of directors chosen by that company and OfficeMax.

Although the actual announcement didn’t go as planned, the deal has been rumored for years as the struggling office supply sector deals with fickle consumers and businesses that are conserving costs and doing more online.

Analysts say they expect far less pushback from antitrust authorities for this deal than what Office Depot faced in the 1990s, when it tried to merge with Staples, given the changes in the office supply market since then.

Underscoring how tough that business has become, Office Depot reported a fourth-quarter net loss, hurt by a 6 percent decrease in comparable sales at its North American stores and a revenue drop at its unit that serves North American businesses.

Office supply retailers, which are often seen as reflecting overall economic health, have suffered as demand for their products fell in the years after the last U.S. recession led companies to cut spending.

They also face strong competition from the likes of Amazon and Wal-Mart Stores Inc in selling everything from pens and notebooks to furniture and break room supplies to government, businesses and individuals.

SMALL PREMIUM

The offer represented a premium of just under 4 percent to OfficeMax's $13 close. It was not immediately clear if that was enough to satisfy one of the company's largest shareholders, Neuberger Berman, which said earlier this week it would support a deal depending on the terms.

OfficeMax shares rose 9.2 percent to $14.20 in premarket trading. Office Depot was up 10 percent at $5.52, meaning that OfficeMax was still trading below the value of the bid.

The deal, considered long overdue by many on Wall Street, will also give Office Depot and OfficeMax a chance to save hundreds of millions of dollars by closing stores, cutting advertising costs and streamlining their supply chain.

Industry experts have long hoped Office Depot would join hands with OfficeMax to take on Staples, which boosted its international business and clout with suppliers by buying Dutch rival Corporate Express in 2008.

BB&T Capital Markets analyst Anthony Chukumba said the Office Depot-OfficeMax combination would help Staples, however.

"Clearly, you can't make this deal work unless you close a bunch of stores," he said. "Store rationalization is long overdue, and Staples will clearly benefit from just having fewer stores to compete with."

Staples has 39.9 percent of the U.S. office supply market, Office Depot 19.2 percent and OfficeMax holds 15.7 percent, according to Euromonitor International.

Tribune reporter Samantha Bomkamp and Reuters contributed.

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Chicago Marathon registration suspended after web woes


























































Bank of America Chicago Marathon officials suspended online registration for the Oct. 13 race after four hours of problems Tuesday.


Registration began at noon.  For the next 90 minutes, however, almost everyone trying to register was greeted with this:


"This site is currently unavailable.

"Please check back later. 

"We apologize for any inconvenience this may cause you."








Continuing problems forced suspension of registration about 4 p.m.  Many people who got several steps into the process were not certain the registration had gone through.


"Our registration provider is still working to resolve the technical issues that have caused the temporary suspension of registration," race spokesperson Lauren Fimbres Wood said in an email. "We will provide another registration update at 6 p.m.


"Please note that the 2013 Chicago Marathon has not yet sold out. ... Additional updates for participants will continue to be posted to our Facebook page."








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Cinema editors honor “Argo,” “Silver Linings Playbook”






LOS ANGELES(TheWrap.com) – “Argo” racked up yet another guild victory on Saturday night, taking home the American Cinema EditorsACE Eddie Award for Best Edited Feature (Dramatic).


Silver Linings Playbook” won the award for Best Edited Feature (Comedy or Musical).






The award is an unusually reliable predictor of the film-editing Oscar, and adds to a substantial guild-awards haul for “Argo” that also includes honors from the Producers Guild, Directors Guild and Screen Actors Guild. The Writers Guild announces its winners on Sunday.


Silver Linings Playbook” has less overall success this awards season, but has dominated at shows that also include separate categories for comedies.


Over the last 20 years, the group’s drama winner (including one tie) has gone on to take home the editing Oscar 16 times, while the comedy/musical winner has done so once.


In those 20 years, the ACE winner has gone on to win Best Picture 12 times.


Last year was one of the times the ACE Eddie winner and Oscar winner didn’t match: “The Descendants” and “The Artist” won ACE Eddies, while “The Girl With the Dragon Tattoo” won the Oscar.


This year’s ACE Eddie Awards category for Best Edited Feature Film (Dramatic) almost exactly matches the Oscars category for Best Film Editing, with “Argo,” “Life of Pi,” “Lincoln” and “Zero Dark Thirty” all nominated. The only difference is that Oscar voters also nominated “Silver Linings,” while ACE Eddie voters put that film in the comedy or musical category and went with “Skyfall” in the drama group.


In other film awards, Pixar’s “Brave” continued its strong guild showing by winning the honor for animated feature. “Searching for Sugar Man” won the award for documentary-feature editing, adding to its own plethora of awards.


On the television side, one of the two “Breaking Bad” episodes nominated in the one-hour commercial-TV series category won, while the pilot for “The Newsroom” was honored in the one-hour non-commercial-TV category and “Nurse Jackie” won among half-hour series.


Veteran editor Walter Murch (“Apocalypse Now,” “The English Patient”) won the TV movie or miniseries award for Philip Kaufman’s HBO movie “Hemingway & Gellhorn,” while the TV documentary award went to the “American Masters” documentary “Phil Ochs: There But for Fortune.”


Lifetime achievement awards went to editors Richard Marks (“The Godfather: Part II,” “As Good As It Gets”) and Larry Silk (“One Survivor Remembers,” “American Dream”), while the ACE Eddie Filmmaker of the Year Award went to Steven Spielberg.


The show took place at the Beverly Hilton Hotel and was hosted by actor-comedian David Cross.


(Editing by Chris Michaud)


Movies News Headlines – Yahoo! News





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DNA Analysis, More Accessible Than Ever, Opens New Doors


Matt Roth for The New York Times


Sam Bosley of Frederick, Md., going shopping with his daughter, Lillian, 13, who has a malformed brain and severe developmental delays, seizures and vision problems. More Photos »







Debra Sukin and her husband were determined to take no chances with her second pregnancy. Their first child, Jacob, who had a serious genetic disorder, did not babble when he was a year old and had severe developmental delays. So the second time around, Ms. Sukin had what was then the most advanced prenatal testing.




The test found no sign of Angelman syndrome, the rare genetic disorder that had struck Jacob. But as months passed, Eli was not crawling or walking or babbling at ages when other babies were.


“Whatever the milestones were, my son was not meeting them,” Ms. Sukin said.


Desperate to find out what is wrong with Eli, now 8, the Sukins, of The Woodlands, Tex., have become pioneers in a new kind of testing that is proving particularly helpful in diagnosing mysterious neurological illnesses in children. Scientists sequence all of a patient’s genes, systematically searching for disease-causing mutations.


A few years ago, this sort of test was so difficult and expensive that it was generally only available to participants in research projects like those sponsored by the National Institutes of Health. But the price has plunged in just a few years from tens of thousands of dollars to around $7,000 to $9,000 for a family. Baylor College of Medicine and a handful of companies are now offering it. Insurers usually pay.


Demand has soared — at Baylor, for example, scientists analyzed 5 to 10 DNA sequences a month when the program started in November 2011. Now they are doing more than 130 analyses a month. At the National Institutes of Health, which handles about 300 cases a year as part of its research program, demand is so great that the program is expected to ultimately take on 800 to 900 a year.


The test is beginning to transform life for patients and families who have often spent years searching for answers. They can now start the grueling process with DNA sequencing, says Dr. Wendy K. Chung, professor of pediatrics and medicine at Columbia University.


“Most people originally thought of using it as a court of last resort,” Dr. Chung said. “Now we can think of it as a first-line test.”


Even if there is no treatment, there is almost always some benefit to diagnosis, geneticists say. It can give patients and their families the certainty of knowing what is wrong and even a prognosis. It can also ease the processing of medical claims, qualifying for special education services, and learning whether subsequent children might be at risk.


“Imagine the people who drive across the whole country looking for that one neurologist who can help, or scrubbing the whole house with Lysol because they think it might be an allergy,” said Richard A. Gibbs, the director of Baylor College of Medicine’s gene sequencing program. “Those kinds of stories are the rule, not the exception.”


Experts caution that gene sequencing is no panacea. It finds a genetic aberration in only about 25 to 30 percent of cases. About 3 percent of patients end up with better management of their disorder. About 1 percent get a treatment and a major benefit.


“People come to us with huge expectations,” said Dr. William A. Gahl, who directs the N.I.H. program. “They think, ‘You will take my DNA and find the causes and give me a treatment.' ”


“We give the impression that we can do these things because we only publish our successes,” Dr. Gahl said, adding that when patients come to him, “we try to make expectations realistic.”


DNA sequencing was not available when Debra and Steven Sukin began trying to find out what was wrong with Eli. When he was 3, they tried microarray analysis, a genetic test that is nowhere near as sensitive as sequencing. It detected no problems.


“My husband and I looked at each other and said, ‘The good news is that everything is fine; the bad news is that everything is not fine,' ” Ms. Sukin said.


In November 2011, when Eli was 6, Ms. Sukin consulted Dr. Arthur L. Beaudet, a medical geneticist at Baylor.


“Is there a protein missing?” she recalled asking him. “Is there something biochemical we could be missing?”


By now, DNA sequencing had come of age. Dr. Beaudet said that Eli was a great candidate, and it turned out that the new procedure held an answer.


A single DNA base was altered in a gene called CASK, resulting in a disorder so rare that there are fewer than 10 cases in all the world’s medical literature.


“It really became definitive for my husband and me,” Ms. Sukin said. “We would need to do lifelong planning for dependent care for the rest of his life.”


This article has been revised to reflect the following correction:

Correction: February 19, 2013

An earlier version of this article misstated the name of a medicine taken by two teenagers who have a rare gene mutation. The drug is 5-hydroxytryptophan, not 5-hydroxytryptamine.



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Kraft acknowledges faults, unveils new path









From new products like Macaroni and Cheese crackers to Oscar Mayer pulled pork, Kraft Foods Group laid out the strategy on Tuesday that took the company's new products "from worst to first."

The Northfield-based maker of Macaroni & Cheese, Planters and Velveeta was spun off from Mondelez International in October.

In 2009, just 6.5 percent of company sales came from new products, whereas 13 percent of sales were attributable to new products in 2012, according to a company estimate.

It's going to be important for Kraft to keep up the pace as it makes its case for remaining an independent company. Competitor Heinz, which has also lagged in innovation, will be snapped up in a Berkshire Hathaway-led consortium of investors later this year.

Presenting at the Consumer Analysts Group of New York Conference in Boca Raton, Fla., Barry Calpino, vice president of breakthrough innovation at Kraft, delineated the company's changes to how it develops and supports new products.

In 2008, Calpino said, "we were the worst by almost any measure," in terms of its innovation. He added that 17 of the year's 19 new product launches were considered failures. Kraft launched products like Bagelfuls, frozen bagels stuffed with cream cheese; Oreo Cakesters, the iconic cookies made out of cake; and cheesy crackers shaped like and named after Macaroni & Cheese that year.

Among 2008 successes were Ritz Stackers and Starbucks discs for the Tassimo machine, a company spokesman said.

Kraft's 2009 new products performed similarly.

In mid-2010, Calpino said the company brought in an outside firm to study its innovation initiatives. They came back with a succinct statement, he said: "Kraft is where good ideas go to die."

Symptomatic of the problem, Calpino said, was a focus on small ideas, lack of rigor and focus, and little investment in product launches. At the time, he said, innovation was considered a "dead-end job," and employees just accepted that Kraft wasn't good at it.

As a result, he said, Kraft developed an innovation playbook that calls for more investment in fewer, bigger ideas that will receive a lot of support, rather than what he referred to as "Field of Dreams" innovation that amounted to a "build it and they will come" mentality.

Kraft now does more work with its sales team, bringing them into the product development so they could better explain each one's significance to retailers, and investing more heavily behind each launch.

In 2011, Calpino said the company focused its efforts on 13 "big bets," including its MiO brand of water flavoring, Velveeta Cheesy Skillet Dinners and Oscar Mayer Selects, a line of higher-quality meat without artificial preservatives.

In so doing, the company raised its average launch support roughly fivefold, from about $5 million to about $25 million for so-called "big bets." MiO got more than $50 million in support.

MiO, Velveeta Skillets, and Oscar Mayer Selects have become $100 million product platforms, which is an industry sales benchmark for successful product launches.

Calpino said that Kraft is also maintaining focus on its big launches for the first three years rather than moving on after the first year. Other initiatives include improving the level of talent within the organization and appealing more to Hispanics in product development and marketing.

Kraft's major 2013 launches include pulled pork under its Oscar Mayer Selects brand, Cool Whip frostings, and Recipe Makers, a pair of sauce packets to be sold in the pasta and sauce aisle. Consumers add vegetables or protein to the sauces to cook popular dishes like pot roast, sweet and sour chicken, or enchiladas.

As part of the presentation, Kraft CEO Tony Vernon said that Kraft has seen an increasing segment of the population shifting to value priced options. According to company data, 26.5 percent of the population was considered low income in 2009, and that number rose to 28.9 percent in 2012.

"We have an obligation to financially strapped low and middle income families - and I do mean families - that drive America's grocery business," Vernon said. He added that with consumers gravitating the high and low ends of the price spectrum, traditional grocers are getting hurt.

Indeed, local heavyweights like Jewel and Dominick's have been closing stores. Last month, Eden Prairie, Minn-based Supervalu said it had agreed to sell Jewel and four other grocery chains to Cerberus Capital Management, a private investment firm.

"It's critical to have the right price and product offering at every rung on this ladder," Vernon said.

In other words, he said, Kraft needs to have the right products for "a Latina mom who prefers Kool-Aid to Capri Sun," as well as a Baby Boomer who is "choosing Velveeta Skillets over Mac N' Cheese."

Kraft's presentation came on the heels of last week's announcement that fourth quarter sales would be lower than expected after Oscar Mayer cold cuts lost market share to a key competitor, presumably Chicago-based Hillshire Brands.

The company said it expects fourth-quarter net revenues to fall 10.7 percent to $4.5 billion. The final numbers will be reported before the end of March.

Kraft also raised 2013 earnings guidance by 15 cents to $2.75 per share.

The new Kraft Foods Group, which assumed all of the pension obligation for legacy Kraft Foods when it was spun off, also announced a change in the way it handles accounting for its pensions last week.

eyork@tribune.com | Twitter: @emilyyork

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