Life After Ice Buckets: ALS Group Faces $94 Million Challenge

The ALS continues to bring in huge donations this summer for efforts to cure and treat what's commonly known as . As of today, the viral campaign has raised more than $94 million for the ALS Association. That's compared with $2.7 million raised by the group during the same time last year.

“ Everybody will be watching. So a year from now, people will say, 'Where did that money go, and what's the social return on that investment?'

Now the association faces a challenge of its own: figuring out the best way to spend all that money.

"It's amazing. It's perhaps a little overwhelming," says Barbara Newhouse, the group's president and CEO.

She says it's a huge responsibility, handling more money than the group has ever had before.

"It's sort of like the lottery winner that receives a lot of money and four years later is looking in the mirror saying, 'What did I do with all that money? Where did it go?' " she says. "We don't want to be that kind of lottery winner. We want to take this money and very thoughtfully plan out exactly what we're going to do with it."

Newhouse says the group has already begun consulting with clients, volunteers and its 38 chapters across the country on how the money should be spent. She says the focus is on expanding the work they already do — funding , providing care and counseling for ALS patients and their families, and advocacy. Proposals will be discussed at a board of trustees meeting in October. And then, she says, decisions will be made — very carefully.

"It's not about spending money quickly. It's about spending money thoughtfully," she says.

agrees, with a caveat. He's president and CEO of , which rates and analyzes U.S. charities. His group gives the ALS Association four stars, its highest rating. But Berger also says the ALS charity faces a tough balancing act — investing the money well, but not sitting on it for too long. He says most donors expect the money they give to be spent in a timely way.

"You'll see situations where charities have stockpiled money when they've gotten an influx like this, and donors have gotten very upset about it," Berger says. "Because their expectation is: The problem is now, the need is now, the organization needs to step up and dramatically increase its services."

He and others recall how donors were when the American Red Cross received hundreds of millions of dollars after the Sept. 11 terrorist attacks and then diverted some of the funds to other needs.

Berger says, no matter what it decides, the ALS Association has to share its plans as soon as possible, so people .

, associate dean at Indiana University's School of Philanthropy, says he thinks most donors understand that curing a neurodegenerative disease such as ALS is , but he warns, "Everybody will be watching. So a year from now, people will say, 'Where did that money go, and what's the social return on that investment?' "

Newhouse says she's well aware of all this and that she has already been inundated with advice.

"I'm getting emails, everything from, 'Spend the money this way' to emails that say, 'Take your time, do it right' to people who say, 'I've got the cure for ALS, so just pay me, and I'll give you the cure.' I'm getting it all," Newhouse says.

She admits, though, that for someone running a charity, there are worse problems to have.

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Bad Memories Erased? Not Exactly According to Neuroscience

 

Get ready for the over-the-top headlines. Have the memories of that emotional breakup erased. Bad memories from that beach vacation? Just get it replaced by a good one. The ethics of doing that would be jaw-dropping.

A new study, published in Nature, does show that your emotions can be altered. It’s a highly complex experiment and could be eventually used as a treatment pathway for PTSD and other severe mental disorders. Sorry, the clinic to get over the bad breakup is way down the list for scientists.

What the research showed is a clear pathway between our memories and the emotional weight we assign to them. Think of it like the spot you had a wreck. Most people go out of their way to avoid the area or become hyper-vigilant in that spot.

This experiment involved genetically engineered mice, and any applications to humans is years away. Susumu Tonegawa of MIT, led the research team and spoke to reporters. “We have no intention…to use this kind of technology in order to alter normal, healthy people’s minds.”

It is really cool science though. The team had to genetically alter the brain cells of the mice so that neurons would respond to pulse light. For the experiment, they went on opposites ends of the spectrum. Fear was induced through shocks to the paw, and the pleasure center was introduced via a female mouse.

Of course, the mice quickly learned to avoid the area where they got shocked, and sought out the area with the female mouse. No word on if the mice like both.

The research team then used the blue laser pulse light to essentially turn the brain cells on or off. It was cut and dry too. Once the blue light was shone onto the mouse, the fear they had of the shock area was gone.

Researchers said they chose the fear and pleasure associations for a clear delineation in the test results. Human emotions, and even mice emotions, are seldom as cut-and-dry as the standard shock therapy. We live in a complex world, and emotions are often highly charged.

The team is hoping that their experiment gets picked up by other scientists and further studies take place. If you could help a soldier that is disabled due to PTSD with a therapy born out of this, it would be a revolutionary step in mental health care.

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E-Cigarettes Should Be The Last Resort For Smokers Trying To Quit, American Heart Association Says

 

  • FILE - In this April 23, 2014, file photo, an electronic cigarette is demonstrated in Chicago. In a surprising new policy statement, the American Heart Association backs electronic cigarettes as a last resort to help smokers quit. (AP Photo/Nam Y. Huh, File)

Associated Press –  The American Heart Association's first policy statement on electronic cigarettes backs them as a last resort to help smokers quit. The American Cancer Society has no formal policy but quietly took a similar stance in May.

Both groups express great concern about these popular nicotine-vapor products and urge more regulation, especially to keep them away from youth. They also stress that proven smoking cessation methods should always be tried first.

But if those fail, "it is reasonable to have a conversation" about e-cigarettes, said the Heart Association's president, Dr. Elliott Antman. The Cancer Society said e-cigarettes "may be a reasonable option" for people who could not quit after trying counseling and approved methods, such as nicotine patches.

Neither group recommends e-cigarettes for smoking cessation, and makers of the devices do not market them that way.

E-cigarettes are battery-powered devices that vaporize nicotine. They've been sold in the U.S. since 2007 and now have millions of users worldwide and nearly $2 billion in annual sales. They contain less toxic substances than traditional cigarettes do, but little is known about their health effects.

Whether they help or hurt anti-smoking efforts is hotly debated. Some say they encourage smoking by letting people maintain their habit in places where cigarettes are banned. Others say they are a less risky way to satisfy a nicotine craving for people who want to quit, similar to how methadone is used to curb heroin abuse.

This concept, called harm reduction, "is probably the most important and the most contentious issue that the tobacco community is dealing with right now," said Tom Glynn, who recently retired as the Cancer Society's top scientist on the e-cigarette issue.

No solid evidence shows that e-cigarettes aid smoking cessation unlike the nicotine patches, gums and medications approved now.

"We need hard-nosed regulation for e-cigarettes and we need more research," Glynn said, but mostly, "we need to have people stop smoking combustible cigarettes."

The Heart Association stressed the toll — 20 million deaths in the U.S. alone from tobacco use over the last 50 years.

"We are fiercely committed to preventing the tobacco industry from addicting another generation of smokers," says a statement from the association's chief executive, Nancy Brown.

Besides nicotine — "a highly addictive chemical no matter what form it comes in" — some e-cigarettes form other products such as formaldehyde, a carcinogen, Antman said.

"There are many things we see as dark clouds on the horizon" about e-cigarettes' effects on blood vessels and secondhand exposure, especially to pregnant women, he said.

The Heart Association policy was published Monday in its journal Circulation. The Cancer Society statement was in a patient page accompanying an article on e-cigarettes in the group's journal for doctors.

In April, the federal Food and Drug Administration proposed treating e-cigarettes as tobacco products with rules such as a ban on sales to those under 18 and warning labels. Earlier this month, attorneys general from more than two dozen states sent a letter asking the agency to also ban flavors — more than 7,000 are available. The American Medical Association also has urged a ban on kid-appealing flavors and other moves to keep e-cigarettes out of young hands.

The Campaign for Tobacco-Free Kids has pushed for regulation and does not embrace the view that e-cigarettes may have a role in smoking cessation.

"Quitting smoking is hard," and people often try several times before they succeed, says a statement from a spokesman for the group, Vince Willmore. If they can't, doctors should work with them to come up with a plan, but the focus should be on approved therapies, he wrote.

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To post or not to post on social media, that is the question

Privacy-wary parents are increasingly pausing before they post photos, names and other information about their wee ones on social media. Some are choosing a complete blackout, while others opt for nicknames and a few carefully selected snapshots.

Here are some social media tips for parents, relatives and friends.

— ASK FIRST, POST LATER

If you don't know how a parent feels about having photos of their kids posted on Facebook, Instagram or elsewhere, ask before uploading a photo and before you tag the parents in a photo. This goes even for close relatives. Actually, it's not a bad idea to ask everyone you post a photo of if they're cool with it, especially if the snaps were taken at a party, swimming pool or any other less buttoned-up situation. It can prevent awkward conversations later.

— LIMIT AUDIENCES

Facebook's privacy settings are complex, but they also offer granular settings that let you pick who can see your updates. One way to do this: Create a "secret" group and add the members you want. The problem here is that anyone in the group can add new members to the group.

Another way to limit the audience of each post you share is to click on the right tab under your update, which may currently say "friends" or "public." Click on "custom" and choose which of your Facebook friends you want to share with and which ones you'd like to exclude. It's simpler on Instagram, where you can either lock your account or set it to public.

— TALK TO YOUR KIDS

Opinions on the age at which parents should start talking to their kids about Internet and social media use vary. Some parents start as soon as their child is old enough to use a smartphone, which can be as early as 2 or 3 years. Amy Heinz, who blogs about her kids, often talks to her 8-year-old about posts she writes about him, but says her younger children, who are 5 and 3, know about the blog but "don't have a concept" of what it means exactly. Caroline Knorr, parenting editor at the nonprofit Common Sense Media, waited until her son was 15 before posting a photo of him on Facebook — and asked his permission first.

— GO THE OLD-FASHIONED ROUTE

Some parents opt for e-mailing or texting photos to one person or to a small group rather than sharing them more widely on social media. Online storage services such as Google Drive and Dropbox also let you distribute photos privately, as do photo-sharing sites such as Flickr. Of course, there's always the old-fashioned snail mail method, if you can still find a place to print snapshots.

— DON'T EMBARRASS THEM

That photo of your little one with pea soup all over her face, or the one that shows her first time on the potty might be funny at the time, but think about what she may think of the photo if it's still online when she's a teen. Today's generation of parents did not grow up with the reality that their private moments growing up will be documented and often posted on the Internet for all eternity. Before posting a photo or anecdote, take a moment to imagine a conversation about it with your child 10 or 15 years from now.

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New data reveals shocking details of human sleep habits

As it turns out, New York is far from “the city that never sleeps”

By Ian Lang, Daily Digest News
Wednesday, August 20, 2014
 

 

 

Jawbone, best known as the high-tech hand-free headset used by only the world’s coolest and most important cell phone talkers, also has a nifty device called UP, which can monitor both its wearers sleep and activity levels. Thanks to a study Jawbone conducted using data from UP wearers, they’ve given us a fascinating insight into not just human behavior, but culture around the world, as well. Some takeaways? New York doesn’t sleep much (but it’s undeserving of it’s “city that never sleeps” moniker), and almost no one sleeps enough.

In the US, New Yorkers average 6 hours and 47 minutes of sleep per day, and they start things on the later side – by 9 am, 30% of New Yorkers are still snoozing. They are, however, the most active city in the US, averaging 8,704 steps per day. Contrast New York with Washington, DC, and you see the military influence on the differences in culture: DC sleeps about the same amount of hours, but by 7:30 am, just a third of DC residents are still asleep. The smaller, more localized nature of the city also leads the Hill crowd to take fewer steps at 8,262.

World wide, Tokyo is hands-down the busiest city – they sleep, on average, just 5 hours and 46 minutes of sleep per night. They also happen to get there by being the last to go to bed at night and the first to wake in the morning. Dubai, though not the sleepiest city, has the most flexible sleep schedule with 10% of UP users still asleep at 11 am. The honor of best rested city in the study goes to Melbourne, Australia – their residents showed an average of 6 hours and 57 minutes of sleep per night.

Most health professionals recommend getting anywhere between seven and nine hours of sleep per night, and no city in the study averaged out to even the minimum of seven – signs, possibly, that as a species we’re over-extended. The cultural differences are also interesting – workers in Beijing, for instance, can be seen taking afternoon naps in the workplace, as can citizens of Madrid. All told, no city ever had anywhere close to 100% of its residents asleep at once (the maximum was 95% due to early risers and shift workers). In that regard, it seems that every city is truly the city that never sleeps.

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