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Ice Bucket Challenge: Cash Raised Can't Fill Hole in ALS Research

Go ahead and do the Ice Bucket Challenge. Just don't fool yourself into thinking you're actually helping to find a cure.
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Bill Gates did it. So did Derek Jeter and Oprah Winfrey. Former President George W. Bush said he’d write a check instead, but got a bucket full of ice water dumped on his head anyway.

The Ice Bucket Challenge is lighting up social media, making people laugh and spawning a mini-industry of blooper videos.

It’s also raised $42 million — and counting — for the ALS Association. The group is almost speechless with delight and surprise. During the same time last year, it raised $2 million.

But anyone who thinks that money is going to cure ALS is just dreaming, experts point out.

Yes, it’s a shot in the arm for the ALS Association, which advocates for scientific research to treat amyotrophic lateral sclerosis (ALS), also called Lou Gehrig’s disease after a famous baseball player who died from it. And there’s little doubt it will go to medical research.

“There's so many ways we can go with these dollars on the research front,” says Barbara Newhouse, President and CEO of The ALS Association. “It's going to take some thoughtful discussion around the types of research and believe me, since this started, I'm getting requests coming in moment by moment with everybody having their own spin on research. So we're going to work prudently through a process that gets us to what's the right use of these dollars.”

“These flash-in-the pan things that will go away after a few months will not help ALS in the long run."

Many studies are under way and pending on ALS, which affects about 12,000 people in the U.S. There is no cure, and patients die after suffering through gradual paralysis. White men and veterans are far more likely to develop ALS, but no one knows why.

The ALS Association is helping pay for a study of people with an inherited form of ALS to see whether a drug that targets the mutated SOD1 gene responsible will help. A company called ISIS is developing the drug. Early trials suggest the approach is safe, but not whether it will help. The group also helped pay for research that has discovered other genes involved in the disease.

But if you really want to support medical research, get on the phone to your member of Congress and demand a stop to cutting the National Institutes of Health budget, experts say.

That’s because private donations are a figurative drop in the bucket compared to U.S. government funding. NIH pays out $30 billion a year for medical research, compared to about $5 billion raised by philanthropy in 2007.

“We are the biggest funder of biomedical research in the world,” says NIH director Dr. Francis Collins.

But budget cuts have stripped this medical research, says Dr. Jonathan Serody of the University of North Carolina. Private donations don’t come close to making up for it.

“If a million people would donate $100 a year for 30 to 40 years, you might get a breakthrough for ALS,” Serody, who uses NIH funds to help support his research into bone marrow transplants, told NBC News. “These flash-in-the pan things that will go away after a few months will not help ALS in the long run. Researchers need dependable money.”

That means year-in-and-year-out support, so researchers can plan their careers and rely on being able to see experiments all the way through. A single $100 donation does little to support that, Serody says.

And Congress has slashed the NIH budget. “Almost no one realizes how dire the research situation is for NIH,” Serody said. Not only has funding not increased to stay up with inflation but it was slashed by 5 percent because of the sequester — remember that little budget maneuver that took effect because Congress couldn’t agree on a final budget plan?

In 2010, NIH spent $59 million on ALS research. It’s fallen by a third since then.

“Right now we are leaving about half of the good ideas on the table for lack of resources."

Although Congress doubled the NIH budget in 1998, the NIH budget has declined by about 25 percent — more than $6 billion — over the last decade.

It’s bad, Collins agrees. NIH has cut in half the number of grants for research funding it approves. “Right now we are leaving about half of the good ideas on the table for lack of resources,” Collins told NBC News. Only 16 percent of applications get funded, compared to 30 percent 10 years ago.

“That’s great science we are missing out on,” Collins said.

And it’s a shame, because studies are giving tantalizing glimpses at what might cause ALS, including damaged genes, new ways to study the disease, including tissue grown from stem cells, and potential treatments. “It’s a massive task,” Collins said. “And unfortunately the resources to carry that forward are severely constrained right now.”

Collins doesn’t buy into the argument that giving money to campaigns like the Ice Bucket Challenge somehow diverts resources from elsewhere. “I think in general any focus on a disease is a good thing as long as it doesn’t squeeze out all of those other thousands of diseases,” he says.

Bo Stern agrees. Stern, a pastor in Bend, Oregon, who’s written several books, including one about the struggles of her husband, Steve, with ALS, agrees with Serody that the movement is short-lived. “So, fear not, dear reader, this too shall pass and your Facebook newsfeed will go back to cat videos and kids singing Let It Go,” she writes in her blog.

She nonetheless urges people to do it, as does Collins.

“I am hoping there is a ripple effect here, that public interest in potential medical research will spill out from ALS to lots of other conditions,” Collins said. “Where are … breakthroughs likely to come from? Research.”