Death, Facebook and the Blurred Line Between Real and Virtual

As the dividing line between our online and offline lives continues to fade, more and more of what happens in the “real” world is also seeping into the online world—and that includes death. So how should we deal with it when our friends or loved ones die? I started thinking about this recently when I decided to live-tweet a friend’s funeral (something that many people felt was inappropriate), and it was reinforced for me when I saw the same friend’s face pop up in my Facebook (FB) chat list and even saw updates in my stream from his page. What is the appropriate response when this happens? Is it a sign of how creepy social networks can be in such situations, or is it just part of what living our lives online means now?

I confess that when I first saw my friend Michael’s face appear in my chat list, I was taken aback—and more than a little disturbed by it. It was a couple of weeks after his funeral, and so the memory of his death had faded to some extent, and his smiling picture felt like a rude reminder. It reminded me of Web articles I had seen about how (or whether) to delete deceased friends or family members from Facebook’s social graph, and at first I thought about doing that.

But then I thought about how difficult it had been deleting another friend’s contact information from my cell phone after he died (this was before Facebook became popular) and how it felt as if I were deliberately forgetting about that person, which didn’t feel right.

It occurred to me that we often keep photos of loved ones in our wallets or in picture frames on our mantelpieces, as a way of remembering them after they are gone. I have pictures of my father, who died more than a decade ago now, as part of a random photo slideshow that comes up on a spare computer and on the television for the same reason. So why does it feel so different when we see that person’s avatar pop up in our Facebook feed or a chat window? Perhaps because social media is inherently about communication—and in most cases real-time communication—and that person can no longer be communicated with.

Facebook has a process whereby a person’s page can be “memorialized,” or turned into a kind of static page as a tribute to them, where friends and loved ones can post and see messages posted by others, but access is restricted, and it doesn’t show up in recommended lists (you can ask the social network to do this by filling out a form). In many cases, particularly when young users die in some violent or tragic way, their friends turn the page into a memorial quite quickly—and of course journalists then often show up asking for comments or photos, which brings up a host of other questions about what’s appropriate.

But if the page belongs to someone who hasn’t really been a public figure and didn’t die in any kind of newsworthy way, it falls into a kind of grey area. Do you maintain the page? Mothball it? Eventually delete it? In the case of my friend Michael, who was a fairly prominent user of social media in his job as a marketing professional in Toronto (one of the reasons I believed he wouldn’t mind my live-tweeting his funeral), his family chose to keep the page alive—and has even posted messages to him as though he were still around, which I find heartwarming in an odd way.

And Facebook is just one part of the equation when it comes to handling a person’s social media after they die. What about their Twitter account, or their Tumblr account, or even their e-mail? When my father-in-law died, the family was confronted with a dilemma. because he and his wife had shared an account that used both of their names—so when an e-mail came in from my mother-in-law, his name showed up in the address field as well, which was somewhat uncomfortable. But changing e-mail addresses is not easy.

There are also issues around who owns a user’s social content after he or she dies: Does Facebook own that person’s page and status updates and photos, and if so, what duty do they have to provide it to family members? What about iTunes? Twitter is less of an issue because no users can get access to their tweets anyway, even if they are alive (unless they make a special request, as Andy Carvin of NPR did for his tweets during the Arab Spring). But what about Flickr photos or Pinterest pages? It’s still a somewhat unexplored region of our online lives at this point.

But for me, the more interesting aspect is how we look at all those pages and tweets and photos and avatars. Are they a welcome reminder of that person and how we used to fit into their lives, or are they a cruel joke played on the living because they seem to promise a level of interaction we will never be able to have again? Perhaps they are both—and perhaps it is too much to ask that our virtual worlds be any more comfortable around death than our offline ones are.

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Beating tax cheats key to Italy’s recovery plan

ROME (AP) — Good plumbers may be worth their weight in gold, but when one was spotted zipping around in a bright red Ferrari, Italian tax police were fast on his trail.

Stamping out entrenched tax evasion is crucial to Premier Mario Monti‘s quest to keep Italy from succumbing to the European debt crisis, and it is critical to fellow eurozone members in more dire straits, such as Greece and Spain — which are also notorious for making cheating the taxman a way of life.

Indeed, Greece’s international rescue creditors have been pressing Greece for two years to reform its ailing tax system, citing poor collection as a key factor keeping the country mired in crisis. In Spain, where tax fraud is rampant, as much as €90 billion ($ 150 billion) is lost each year to tax fraud — the equivalent of the country’s national debt, according to Spain’s main tax inspectors union.

To succeed in Italy, authorities will have to catch the legions of self-employed and small business owners who brazenly lie about their earnings, like the plumber in the eastern town of Pescara, who socked away undeclared income in 30 bank accounts, or a successful pastry shop owner in Calabria, who on his tax return claimed he was earning next to crumbs.

And those are the less sophisticated schemers.

Tax police officials say that wealthy Italians, their companies and foreigners who make their money in Italy are increasingly trying to avoid taxes by using such strategies as falsely declaring that their base of operations or residence is abroad.

Another daunting challenge is the so-called “submerged” economy, a term embracing Italians who declare only a fraction or nothing at all of their earnings — and dentists, lawyers, doctors and other big-earning professionals are frequently among the worst offenders.

Tax evasion of all types in Italy totals about euros 240 billion ($ 300 billion), or 15 percent of the country’s gross domestic product of €1.6 trillion ($ 2 trillion), tax police estimate. Winning the war on tax cheats could therefore more than wipe out the country’s budget deficit, which is expected to increase to euros 42 billion ($ 53 billion), or 2.6 percent of GDP this year. That would start knocking away at the nation’s colossal public debt of €2 trillion ($ 2.5 trillion), or 125 percent of GDP.

But “big international frauds are up,” lamented Lt. Col. Gianluca Campana, in charge of the income tax unit revenue protection office at the Guardia di Finanza, Italy’s financial police corps which reports to the Economy Ministry.

The entrenched practice by many cafes, eateries, hair dressers and similar small business of neglecting to give customers mandatory cash register receipts commonly grabs the attention in crackdowns on tax evasion in Italy.

But, cautioned Campana, “one false (big business) invoice can equal no cash register receipts for coffees for two months.”

Over all of 2011, the total of non-declared income discovered by tax police amounted to some €50 billion ($ 65 billion), of which some 20 percent was due to international tax evasion, he said. By comparison, in the first nine months of this year, tax police discovered some €40 billion in undeclared income, with 30 percent of that blamed on international tax evasion, Campana said.

With the economic crisis shrinking bottom lines, and Italy increasingly on the hunt for big-time evasion, especially by big businesses, “there is a tendency to move capital abroad, using maneuvers apparently legal but which really are not,” Campana said. A classic technique consists of declaring one’s formal residence abroad in tax havens like Monte Carlo. Also common are companies that clearly have their business base in Italy but claim it is abroad in countries with far lower tax brackets.

Campana is armed with three degrees, including a masters in tax law from Milan’s Bocconi University, the prestigious economics institute formerly headed by Monti. He brings skills to this specialized police corps that are as finely tuned as sharp-shooting.

“We are going after the big cases (of evasion) in order to rake in more money,” Campana said.

The Ferrari-driving plumber hid some €2 million ($ 2.6 million) of his income over several years by giving his customers invoices — for jobs ranging from fixing leaks to installing new bathrooms — for the actual cost of his work, but kept a second, false registry of much lower figures for tax purposes, said Pescara tax police Col. Mauro Odorisio.

Armed with a 2008 law, authorities confiscated assets belonging to the plumber equivalent to the approximately €1 million ($ 1.3 million) they contend he owed in taxes, Odorisio said.

With Ferraris in red or yellow, and snazzy Porsches parked inside, Guardia di Finanza garages practically resemble luxury car dealerships.

The cars get sold to help recoup unpaid taxes and interest.

Overall, tax revenues in Italy were up by 4.1 percent, says the Economy Ministry, when comparing figures from the first eight months of 2012 with the same period in 2011, but much of that was due to new taxes, and not necessarily a revolution in citizens’ consciences about tax obligations.

Monti’s recipe relies heavily on taxes that are nearly impossible to avoid, such as sales tax. He also revived a property tax that his populist predecessor, Premier Silvio Berlusconi, had abolished in a promise to voters.

The ministry’s report last month noted that the property tax figured prominently in the “tendency toward growth” in tax revenues. But sales tax revenue dropped slightly despite higher sales tax rates, indicating that consumers were feeling the pinch of the stagnant economy.

The heavier fiscal burden seems to have driven some honest citizens to rebel against the engrained culture of tax evasion.

The number of phone calls from the public to the tax police’s hotline to report stores, restaurants and other businesses that didn’t give customers sales receipts has almost doubled in the first nine months of this year, compared with the same period in 2011.

It’s apparently dawning on Italians that shirking taxes in the end only costs them, in terms of ever-higher levies and cutbacks in public services.

Citizens now increasingly understand that “the lack of revenue over time caused by tax evaders forced the government to stiffen the tax burden on categories where you can’t evade taxes,” Campana said, referring to workers whose taxes are deducted from paychecks. Another area where evasion is close to impossible is real estate ownership.

Odorisio noted the crackdown included extending the statute of limitations on tax evasion from six to eight years and establishing prison as a penalty for big-time evasion.

Other weapons include a measure promoted by the Monti government that limits cash payments to no more than €1,000. Paying by credit card or personal check is a relatively new habit for Italians, who are used to carrying wads of cash in their pockets, even for big-ticket items like home renovations or vacations.

Past governments in Italy sometimes resorted to tax amnesties to try to boost revenues. But critics, contending some Italians counted on such a possibility, described that strategy as only perpetuating the tax cheat culture.

Spain hasn’t had much success with its own tax amnesty introduced by the conservative government in March. That measure, expiring soon, allows undeclared assets or those hidden in tax havens to be repatriated by paying a 10 percent tax without criminal penalty. The amnesty is estimated to recuperate far less than the expected €2.5 billion ($ 3.25 billion).

Greece saw demands for tax system reform from international rescue creditors added on to conditions for future rescue loan payments, as Greek authorities acknowledged that a high-profile campaign to crack down on major tax cheats has produced disappointing results.

The cash-strapped government over the last 10 months recovered just €19 million ($ 25 million) of the €13 billion ($ 17 billion) of arrears on the list. A prominent Greek magazine publisher recently tapped anger over rich tax evaders by publishing a list of people allegedly holding Swiss bank accounts. He was acquitted this month of breaching privacy laws.

Meanwhile, Italian tax police are chasing after cheats who have shown some of the most chutzpah about not paying their fair share of taxes, like the Padua woman who advertised on the Internet that she had a couple of “cash-only” bed and breakfast rooms to let.

Tax police discovered the lodgings are part of an apartment in public housing she was given after falsely declaring she was indigent on her annual tax forms.

____

AP reporters Derek Gatopoulos in Athens and Ciaran Giles in Madrid contributed to this report.

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At Mao-style conclave, China embraces Twitter age

BEIJING (AP) — During China’s last party congress, the cadres in charge of the world’s most populous nation didn’t know a hashtag from a hyperlink. But five years on, there’s a new message from Beijing: The political transition will be microblogged.

Party officials have this fall embraced social media with unprecedented enthusiasm, hoping it can help guide public opinion and stir up excitement about the staid and scripted party meeting taking place this week in Beijing that kicks off a transition to a new, younger set of top leaders.

Dozens of the more than 2,000 party delegates, among them Chairman Mao‘s grandson, are using social media to wax rhapsodic about China’s rise and Party General Secretary Hu Jintao’s live 90-minute reading of highlights from this year’s party work report. Typical posts include pictures of grinning delegates on Tiananmen Square and mobile snapshots of poinsettia arrangements and chandeliers from inside the Great Hall of the People, where the congress is meeting.

Guo Mingyi, a miner from the frigid northeast who was making his debut as a party delegate, tweeted: “On this land with great affections, how can I not sing, how can I not tear up, I love this piece of land, the people and the great Chinese Communist Party!”

State media also are posting microblog interviews with officials and shooting out updates about the congress schedule via Twitter-like accounts.

But apart from being a tool to deliver Beijing’s approved policy messages to the mobile phones of ordinary Chinese, the Internet is a two-way street that’s also being used by the public to poke fun at and critique the propaganda. Online commentators have compared the gushy crying and clapping of some delegates over Hu’s speech to North Korean style mass hysteria.

Responding to state media report about how a female delegate, Li Jian, cried five times at Hu’s work report, a Sina microblog user writing under the name ‘Buying Soysauce’ wrote: “I sobbed uncontrollably too, at the thought that these people were my compatriots.”

Wang Keqin, the assistant to the editor in chief of Beijing’s Economic Observer magazine, wrote about the tears of another delegate, He Guiqin: “It’s back to North Korea overnight!”

Other critics have dredged up old headlines from 1987 about the scourge of bribe-seeking and posted them online to highlight how little party rhetoric, and party problems, have changed despite major social change over the last three decades.

The clash of ideas underscores just how important the Internet has become in China’s campaign to guide public opinion — a major shift from just a few years ago.

At the last party conclave in October 2007, Twitter was a little over a year old and hashtags had only just been introduced. China’s leading homegrown Twitter-like microblog service, Sina Weibo, was still two years from launch.

But as elsewhere, China’s Internet population has exploded over the last five years, jumping from 170 million to more than 500 million today. Social media has boomed with it and now plays a huge part in everyday Chinese life, particularly for urban residents who use it to find restaurants, jobs and mates.

Beijing’s initial reaction to social media was to block and censor, to limit conversations by banning access to Twitter and Facebook and to limit mention of anything considered sensitive or destabilizing with keyword filters. Though authorities still use those tactics, the government is increasingly proactive and working to wrest control of the online conversation by flooding the zone with its own content.

David Bandurski, a researcher with the China Media Project at Hong Kong University, says Chinese officials have learned that simply banning or blocking reports is no longer effective in the porous Internet sphere and that stifling information can backfire by fanning more interest in scandals and crises and sparking online rumors.

“You can’t just stuff the genie back into the bottle,” said Bandurski. “You have also to channel public opinion … officially, they are seeing social media as the best way to send out their authoritative information and kind of drive the agenda.”

But the government remains yoked to its party-ese, which can seem hopelessly out of date in the Twitter age.

A dispatch on the trend by the official Xinhua News Agency gives a hint to the flavor of Beijing’s rhetoric.

“The Internet has been unprecedentedly embedded into the ongoing National Congress of the Communist Party of China,” the news agency trumpeted over the weekend. “Not only can contents on the Internet be found in the congress report, but online media practitioners are attending the congress in person.”

On Saturday, Chairman Mao’s grandson Mao Xinyu tweeted this to his 105,943 followers on Renmin Weibo, the microblog of the official party paper, the People’s Daily: “Mao Zedong thought will always be the guiding ideology of the party.”

It got 155 retweets, a mediocre showing in China‘s lively web sphere.

___

Follow Alexa Olesen on Twitter: http://twitter.com/alobeijing

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One in three open to traveling for medical treatment, poll finds

NEW YORK (Reuters) – Looking for an affordable face lift without breaking the bank? Want to combine a tummy tuck with two weeks in the sun? You’re not alone.

Nearly a third of people surveyed around the world say they are open to the idea of medical tourism – traveling abroad to enjoy cheaper medical or dental treatment, according to a new Ipsos poll of 18,731 adults in 24 countries.

Indeed, 18 percent said they would definitely consider it.

“The concept of medical tourism is well accepted in many countries,” said Nicolas Boyon, senior vice president of Ipsos Public Affairs.

“With the exception of Japan there are at least one third of consumers in every country we covered that are open to the idea,” he said in an interview.

Whether for economic reasons or perceptions of superior treatment elsewhere, for treatments ranging from cosmetic to life-saving surgeries, Indians, Indonesians, Russians, Mexicans and Poles were the most open to the idea of being medically mobile.

Thirty-one percent or more people in each of those countries said they would definitely consider traveling for a medical or dental treatment.

Conversely, people in Japan, South Korea, Spain and Sweden were least likely to be medical tourists.

Boyon said it was not surprising that men and women from emerging nations would be medically mobile if the treatments were cheaper.

“This probably reflects perceptions of medical care in other countries that is superior to what is available at home,” he said.

But he was intrigued by the percentage of people in developed nations such as Italy, where 66 percent said they would definitely or probably consider medical tourism, along with Germany (48 percent), Canada (41 percent) and the United States, where 38 percent of people were open to the idea.

“It is a reflection that the medical profession is no longer protected from globalization,” Boyon said.

RISKS VS. BENEFITS

Although medical tourism spans a range of treatments, the most common are dental care, cosmetic surgery, elective surgery and fertility treatment, according to an OECD report.

“The medical tourist industry is dynamic and volatile and a range of factors including the economic climate, domestic policy changes, political instability, travel restrictions, advertising practices, geo-political shifts, and innovative and pioneering forms of treatment may all contribute towards shifts in patterns of consumption and production of domestic and overseas health services,” the report said.

Various studies using different criteria have estimated that anywhere between 60,000 to 750,000 U.S. residents travel abroad for health care each year, according to the Centers for Disease Control and Prevention.

Along with variations among countries, the Ipsos survey showed that younger adults under 35 years of age were more likely in most countries to consider medical tourism, than people 50 to 64 years old.

In India, 86 percent of young adults said they would consider medical tourism, along with 77 percent in China, and 71 percent in Italy.

Boyon suggested that the cost of travel, proximity, borders and quality of care may also be factors considered by potential medical tourists. In both Italy and Germany, about 20 percent of adults said they would definitely consider medical tourism. Both countries are near Hungary, a popular destination for health treatments.

Ipsos conducted the poll in Argentina, Australia, Belgium, Brazil, Canada, China, France, Germany, Great Britain, Hungary, India, Indonesia, Italy, Japan, Mexico, Poland, Russia, Saudi Arabia, South Africa, South Korea, Spain, Sweden, Turkey and the United States.

(Editing by Elaine Lies and Bernadette Baum)

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Wall Street gains, led by retail sector after Home Depot

NEW YORK (Reuters) – Stocks rose on Tuesday in a sharp turnaround from earlier losses, led by gains in retail stocks after strong results from Home Depot , the world’s largest home improvement company.

Traders said rumors that Spain may be close to asking for a sovereign bailout may have boosted buying.

Dow component Home Depot Inc was the top gainer on the S&P 500, climbing 4.5 percent to $ 63.90 after reporting earnings that beat expectations and raising its outlook. Rival retailer Lowes Companies also gained, up 1.1 percent to $ 32.32.

Energy stocks, which were trading lower earlier, also turned around sharply. The S&P 500 energy sector index <.GSPE> rose 0.7 percent.

Technology shares were little changed and earlier were under pressure from weakness in Microsoft after the executive most widely tipped to be the next chief executive left the company.

The Dow Jones industrial average <.DJI> was up 74.71 points, or 0.58 percent, at 12,889.79. The Standard & Poor’s 500 Index <.SPX> was up 7.49 points, or 0.54 percent, at 1,387.52. The Nasdaq Composite Index <.IXIC> was up 1.24 points, or 0.04 percent, at 2,905.50.

The euro zone debt crisis continued to roil global markets.

“The intraday moves are pretty big today as we continue to be in a rumor-filled market, mainly news out of Europe,” said Ryan Detrick, senior technical strategist at Schaeffer’s Investment Research in Cincinnati, Ohio.

Despite the gains, the S&P 500 was still down nearly 2 percent for the month on lingering concerns about the “fiscal cliff” in the U.S., and debt crisis in the euro zone.

The fiscal cliff is a series of budget cuts and tax hikes that begin to take effect in the new year. Market participants worry that if no deal is reached to avoid going over the cliff, the economy could fall back into recession.

Concerns over this possibility contributed to the S&P’s worst week since June last week, with no sign of a bottom despite a drop of almost 3 percent over the past two weeks.

“The attention in the equity markets has shifted more noticeably to the possibility that the U.S. fails to properly handle the so-called fiscal cliff,” said Ari Wald, analyst at PrinceRidge Group. He said equities in developed countries have been outperforming U.S. stocks despite worries about the euro zone’s financial health.

In other earnings news, AK Steel Holding Corp shares fell 10 percent to $ 4.91 after forecasting a fourth-quarter loss, while Michael Kors Holdings gained 3.9 percent to $ 52.58 after raising its outlook.

(Editing by Kenneth Barry)

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General investigated for emails to Petraeus friend

PERTH, Australia (AP) — In a new twist to the Gen. David Petraeus sex scandal, the Pentagon said Tuesday that the top American commander in Afghanistan, Gen. John Allen, is under investigation for alleged “inappropriate communications” with a woman who is said to have received threatening emails from Paula Broadwell, the woman with whom Petraeus had an extramarital affair.

Defense Secretary Leon Panetta said in a written statement issued to reporters aboard his aircraft, en route from Honolulu to Perth, Australia, that the FBI referred the matter to the Pentagon on Sunday.

Panetta said that he ordered a Pentagon investigation of Allen on Monday.

A senior defense official traveling with Panetta said Allen’s communications were with Jill Kelley, who has been described as an unpaid social liaison at MacDill Air Force Base, Fla., which is headquarters to the U.S. Central Command. She is not a U.S. government employee.

Kelley is said to have received threatening emails from Broadwell, who is Petraeus’ biographer and who had an extramarital affair with Petraeus that reportedly began after he became CIA director in September 2011.

Petraeus resigned as CIA director on Friday.

Allen, a four-star Marine general, succeeded Petraeus as the top American commander in Afghanistan in July 2011.

The senior official, who discussed the matter only on condition of anonymity because it is under investigation, said Panetta believed it was prudent to launch a Pentagon investigation, although the official would not explain the nature of Allen’s problematic communications.

The official said 20,000 to 30,000 pages of emails and other documents from Allen’s communications with Kelley between 2010 and 2012 are under review. He would not say whether they involved sexual matters or whether they are thought to include unauthorized disclosures of classified information. He said he did not know whether Petraeus is mentioned in the emails.

“Gen. Allen disputes that he has engaged in any wrongdoing in this matter,” the official said. He said Allen currently is in Washington.

Panetta said that while the matter is being investigated by the Defense Department Inspector General, Allen will remain in his post as commander of the International Security Assistance Force, based in Kabul. He praised Allen as having been instrumental in making progress in the war.

The FBI’s decision to refer the Allen matter to the Pentagon rather than keep it itself, combined with Panetta’s decision to allow Allen to continue as Afghanistan commander without a suspension, suggested strongly that officials viewed whatever happened as a possible infraction of military rules rather than a violation of federal criminal law.

Allen was Deputy Commander of Central Command, based in Tampa, prior to taking over in Afghanistan. He also is a veteran of the Iraq war.

In the meantime, Panetta said, Allen’s nomination to be the next commander of U.S. European Command and the commander of NATO forces in Europe has been put on hold “until the relevant facts are determined.” He had been expected to take that new post in early 2013, if confirmed by the Senate, as had been widely expected.

Panetta said President Barack Obama was consulted and agreed that Allen’s nomination should be put on hold. Allen was to testify at his confirmation hearing before the Senate Armed Services Committee on Thursday. Panetta said he asked committee leaders to delay that hearing.

NATO officials had no comment about the delay in Allen’s appointment.

“We have seen Secretary Panetta‘s statement,” NATO spokeswoman Carmen Romero said in Brussels. “It is a U.S. investigation.”

Panetta also said he wants the Senate Armed Services Committee to act promptly on Obama’s nomination of Gen. Joseph Dunford to succeed Allen as commander in Afghanistan. That nomination was made several weeks ago. Dunford’s hearing is also scheduled for Thursday.

___

Associated Press writer Slobodan Lekic in Kabul, Afghanistan, contributed to this report.

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Dutch teenagers sentenced in “Facebook murder”

AMSTERDAM (Reuters) – Two Dutch teenagers were sentenced to two years in juvenile detention and three years of compulsory therapy on Monday for ordering the death of a girl after an argument on Facebook.

The case, known in the Netherlands as the “Facebook murder”, has caused widespread debate about the role of social media in violent crime.

The victim, identified only as 15-year old Winsie, was fatally stabbed in January at the request of the boy and girl, who were aged 17 and 16 respectively at the time.

Winsie had argued for weeks with the girl, and they had swapped insults on the social networking site.

“The defendants are guilty of a particularly serious criminal offence. The fact that a friendship between two young girls can turn into deep hate and ultimately into murder being incited is shocking and hard to comprehend,” a court in the city of Arnhem said in a statement.

The killer, who Dutch media named only as Jinhua and who was 14 when he committed the crime, was sentenced in September to one year in juvenile detention.

(Reporting Gilbert Kreijger; Editing by Anthony Deutsch and Pravin Char)

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Vt. Mom Begs FDA: Save My Other Son

Jenn McNary, a mother of six from Saxtons River, Vt., is desperate.

Both her boys have Duchenne muscular dystrophy, but only her 10-year-old Max has access to a wonder drug that appears to be reversing the symptoms of this deadly disease.

His 13-year-old brother Austin is languishing in a wheelchair while Max has been able to take the drug eteplirsen through a highly successful clinical trial.

After 60 weeks on an IV infusion, Max was able to participate in a three-mile Halloween walk.

“It’s the first time ever — he’s never been able to walk that far. He’s always gone with a wheelchair, even as a toddler,” said McNary, 32. “He actually doesn’t look like a Duchenne kid at all. And his balance is great.”

“People all over the world are calling it a miracle,” she said of the drug.

Now, McNary has written petitioned the Food and Drug Administration to give accelerated approval of the medication, the fastest way to help Austin and other boys with the disease.

Both boys, whose last name is Leclair, have the same gene mutation that the drug targets and will eventually kill them. Austin was diagnosed at 3 and Max at 3 months.

McNary and her husband Craig are also raising four other healthy children in a second marriage.

There is no cure for Duchenne muscular dystrophy. Until now, doctors have only been able to use steroids, which just temporarily delay the inevitable loss of muscle strength.

“My brother says he’s doing it for me, that he’s trying really hard,” Austin told ABCNews.com in August. “That’s why he wanted to do it.”

Austin was not allowed to participate in the clinical trial because one of the inclusion criteria was that he be able to complete a six-minute walk.

“This has been a bitter-sweet journey for us,” McNary wrote in a letter to the FDA this week. “As we watch Max get better, we also watch his older brother, Austin, 13, get worse. He suffers, silently, as his disease progresses.”

Duchenne muscular dystrophy affects one in 3,500 male births, about 20,000 children in the United States and 300,000 worldwide, according to Cure Duchenne, one of three organizations that have funded the clinical trial.

The muscular disease strikes between the ages of 3 and 5 as boys progressively lose their ability to walk. Eventually, they are wheelchair bound, their upper body strength fails, and, like Austin, they eventually cannot raise their arms to feed themselves.

Later, their breathing is affected and they require tracheotomies and breathing assistance. Eventually, the heart and lungs fail.

Parents of children who were in the clinical trial of eteplirsen at Nationwide Children’s Hospital in Columbus are calling it a “wonder drug.”

According to McNary, all 12 children in the double-blind study received “some benefit” from the drug. It has no known side effects.

“Even two boys who stopped walking before taking it have stronger upper bodies and their hearts are strong,” she said. “They have progressed to stable.”

Muscular Dystrophy Drug Could Stabilize Disease

If this exon-skipping drug is approved, she estimates 15 percent of boys with Duchenne could be helped, those with the type that skips exon 51. As a class of drugs, they could up to 85 percent of boys with the disease.

Stock prices for its manufacturer, Sarepta Therapeutics. , have soared.

If Sarepta Therapeutics can get accelerated approval, the drug could be available in six to nine months, according to McNary. Otherwise, the wait could be four or five years — too late for Austin.

“We are very encouraged by the data we have seen to date,” said Chris Garabedian, president and CEO of Sarepta Therapeutics, which makes the drug and is pressing the FDA to take action.

“If we start using the drug earlier in patients, we might be able to stabilize whatever state they are in for a longer period of time,” said Garabedian. “We are not going to end up creating Olympic athletes from this drug, but we are encouraged this could really halt or slow the progression.”

McNary is reaching out to media and online petition sites to encourage as many people as possible to write letters of support to the FDA.

But as she waits approval, Austin gets weaker. In the last few months, he has lost all upper body control and must be lifted 100 percent of the time.

Just recently, he was diagnosed with sleep apnea and must go on a nighttime machine to keep his lungs inflated.

Austin keeps his spirits high, according to McNary.

On Halloween, he dressed his wheelchair up as a hot dog stand, carrying his dachshund in a cloth bun. And just recently, his father and uncle took him hunting. They held up the gun for Austin and he shot his first buck — an eight-pointer.

McNary is convinced that if the FDA can move on approving the drug that has healed Max, it can also help Austin.

Until then, he’s “hanging in there,” she said. “He has a huge zest for life.”

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S&P 500 and Nasdaq inch higher, fiscal cliff a concern

NEW YORK (Reuters) – Stocks mostly ticked higher on Monday, but persistent concerns about the upcoming debate on the fiscal cliff limited gains even after last week’s steep sell-off.

Barclays cut its year-end target for the S&P 500 to 1,325, citing fiscal cliff issues.

The S&P 500 dropped 2.4 percent last week, the worst week for the benchmark index since June. It closed below its 200-day moving average for the first time in five months, and an extended run under that level could signal further losses ahead.

Trading volume is expected to be light, with the U.S. bond market and government offices closed on Monday for the Veterans Day holiday.

Last week’s weakness was partly propelled by concerns about whether there will be a timely solution to avoid the fiscal cliff, a combination of government spending cuts and tax increases set to go into effect early next year unless Congress acts to change the law before then. Though most consider it unlikely that no deal will be reached, analysts fear going over the cliff could push the economy back into recession

“Right now, all eyes are on Washington, and we’re just waiting,” said Matthew Keator, a partner in the Keator Group, a wealth management firm in Lenox, Massachusetts. “We’re hopeful something gets done, but we’ve been disappointed before. We need to see something done if we’re going to remain up for the year.”

The S&P 500 is still up 10 percent for 2012, though recent months have eroded those gains. The Nasdaq has fallen for five straight weeks.

The Dow Jones industrial average <.DJI> was down 3.69 points, or 0.03 percent, at 12,811.70. The Standard & Poor’s 500 Index <.SPX> was up 0.87 of a point, or 0.06 percent, at 1,380.72. The Nasdaq Composite Index <.IXIC> was up 4.53 points, or 0.16 percent, at 2,909.41.

Some major acquisition news gave investors some reasons for optimism on Monday. Precision Castparts Corp offered to buy Titanium Metals Corp for $ 2.9 billion, while Leucadia National Corp agreed to buy investment bank Jefferies Group for $ 3.6 billion.

Shares of Titanium surged 42.3 percent to $ 16.46 while Jefferies climbed 13.5 percent to $ 16.19. Precision rose 5.5 percent to $ 180.67. In contrast, Leucadia fell 4 percent to $ 20.93.

“After last week, there could be some bargain opportunities out there,” said Keator, who helps oversee $ 500 million in assets. “Especially since if there is a fiscal cliff deal, that could lead to a tremendous move on the upside.”

Overseas, a report over the weekend showed China’s export growth climbed to a five-month high, beating expectations and adding to recent data suggesting the country’s seven straight quarters of slowing economic growth have ended.

In addition, the Greek parliament on Sunday approved an austerity budget for next year, a necessary step to unblock a new tranche of credit from the European Union and International Monetary Fund before the government runs out of cash. Still, investors remain concerned about whether the EU and IMF will agree to send the next tranche.

Apple Inc rose 0.6 percent to $ 550.42 after the company announced a global patent settlement with HTC Corp <2498.TW>, as well as a 10-year licensing agreement. Apple‘s stock has been under pressure recently, dropping more than 20 percent from its 2012 high to enter bear market territory.

Homebuilder D.R. Horton Inc reported fourth-quarter earnings that beat expectations, helped by a jump in orders. D.R. Horton‘s shares gained 3.1 percent to $ 21.23.

According to Thomson Reuters data through Friday, of the 449 companies in the S&P 500 that have reported earnings, 63.3 percent have topped expectations. But only 38.2 percent of companies have topped revenue expectations – well below the 62 percent average since 2002.

(Editing by Jan Paschal)

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Clarke’s 218 puts Australia on front foot

BRISBANE (Reuters) – Australia captain Michael Clarke scored a brilliant unbeaten double century to give the hosts a remarkable 37-run first innings lead on the fourth day of the first test against South Africa on Monday.

Supported first by a maiden century from opener Ed Cowan in a record stand of 259, and then by Mike Hussey‘s 86 not out, Clarke’s 218 helped lift Australia from 40 for three when he took to the crease on Sunday to 487 for four when stumps were drawn.

It was Clarke’s sixth test century, and his third double hundred, in the 15 tests since he was named captain last year in the wake of the Ashes humiliation and Australia’s quarter-final exit at the World Cup.

Although by no means a chanceless knock, the 31-year-old played with patience when South Africa’s vaunted pacemen got anything out of the Gabba track before punishing anything loose with some fine shot-making.

When he carried his bat back to the pavilion at the end of the day to the raucous cheers of a sparse crowd at the famous Brisbane ground, Clarke had faced 350 balls over 504 minutes and scored 21 fours.

“I’m very happy with that,” Clarke, who accumulated his 1,000 test run of the year during the innings, said in an interview on the boundary.

“I didn’t feel great at the start and I think Ed Cowan batted beautifully.

“We’re in a great position with a 30-odd lead. I’d like another 70 odd runs in the morning and then I want to have a crack with the ball. We’ll see what happens.”

Cowan departed for 136 in heartbreaking fashion just before tea, run out at the non-striker’s end when Dale Steyn got a finger to a Clarke drive that hit the stumps and the opener was caught out of his crease backing up.

RECORD PARTNERSHIP

His partnership with Clarke was an Australian record for the fourth wicket at the Gabba, beating the 245 Clarke and Mike Hussey made against Sri Lanka in 2007.

Cowan’s wicket was the only wicket to fall on the day and Hussey started pouring on the runs as if determined to get the record back for his own partnership with his captain.

The 37-year-old bucked his poor recent form against South Africa by reaching his half century off just 68 balls with a drive through long-off and was closing on a century of his own when play ended.

It was Hussey’s cut four off Morne Morkel with which Australia overhauled South Africa’s first innings tally of 450 and put themselves in with an unlikely chance of even winning a test which lost an entire day to rain on Saturday.

Clarke’s negotiation of the “nervous nineties” for his century had been fraught and he was nearly run out going for a second run that would have brought him to the hundred mark.

There were no such jitters on his approach to the two hundred mark, which he passed by slapping the ball through mid-on for two runs before giving the badge on his helmet another kiss.

Cowan’s century was a retort to those critics who have consistently questioned his place in the team since he made his debut in last year’s Melbourne test against India.

The 30-year-old lefthander reached the mark two overs after lunch by pulling a short Vernon Philander delivery for four to the square leg boundary, beginning his joyous celebrations before the ball hit the rope.

South Africa’s number one test ranking is on the line in the series, which continues with matches in Adelaide and Perth after Brisbane.

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