Local researchers get in on Ice Bucket Challenge to raise money, awareness for ALS

The hottest Facebook trend right now is ice.

The "Ice Bucket Challenge" became a fundraising bonanza in recent weeks for the ALS Association, which has garnered about 107,000 new donors — about 31/2 times the number of people who have amyotrophic lateral sclerosis.


Those who research and treat the rare neurological disorder, better known as Lou Gehrig's disease, aren't even sure how many people knew what it was before the challenge.

"This has been the biggest bang for our buck," Rita Sattler, an ALS researcher in the Robert Packard Center for ALS at Johns Hopkins, said about the money and awareness from the campaign. "Or the biggest bang for our bucket."


Sattler dumped ice water over her head Wednesday to help Packard, which had raised about $25,000 in the past few days from the campaign, which involves taking the chilly bath within 24 hours of being challenged or making a donation to an ALS cause.

Many people appear to have doused themselves and given money before challenging others.

On campus Wednesday, about two dozen other white-coated Packard researchers joined Sattler with buckets, as well as foam boxes and plastic trash cans, in the scientists' version of a wet T-shirt contest. Then they challenged five other academic research institutions and the National Institutes of Health.

The ALS Association said the origin of the Ice Bucket Challenge isn't known, but it was popularized in late July by Pete Frates, a Boston College baseball player who suffers from ALS, in association with the ALS' Massachusetts chapter. Other chapters began challenging supporters and the ice storm began.

Perhaps not since Lou Gehrig abruptly retired from baseball after disclosing he had the disease in 1939 has ALS garnered so much attention.

It may not be surprising that Orioles Adam Jones, Manny Machado and other team members have taken the challenge, given the disease's connection to their sport.

But other athletes, as well as celebrities and politicians have joined in, including Justin Timberlake, Martha Stewart and some of the Kennedys. Even President Barack Obama has been challenged. He said he'd make a donation.

Many Ravens have participated, and the Brigance Brigade, created by O.J. Brigance, a former Raven player and now a team executive, who has ALS, reports "a nice spike in donations."


The ALS Association reported Wednesday that it and its 38 chapters had raised $5.7 million since July 29, compared with $1.2 million for the same period last year.

"To my knowledge there is nothing in our organization's history that can compare to the kind of awareness and funds raised by the Ice Bucket Challenge," said Alex Swope, spokesman for the ALS Association's DC/MD/VA Chapter. "It is truly extraordinary and we look forward to putting those dollars to use helping those living with ALS and searching for treatments and a cure."

Swope said there isn't anything enjoyable about an incurable terminal illness, but the challenge may have resonated because it's fun and accessible. Also, he said it was a way for supporters to call on their favorite celebrities to do something.

Officials at the ALS association estimate about half the general public knew about the disease before the challenge, but the level of awareness is rising now.

ALS is less common than other neurological disorders such as muscular dystrophy and Parkinson's disease, said Dr. Justin Kwan, medical director of the University of Maryland ALS Center. There is only one approved drug to treat ALS, and the disease generally is fatal in three to five years.

That doesn't mean it's not treated, he said. Researchers also are learning more about the biology of the disease, and Kwan believes eventually it will become a chronic disorder that patients could live with.


Kwan said ALS causes degeneration of nerve cells in the brain and spinal cord that control muscle movement. Sufferers lose their ability to move their arms and legs. Then they lose their ability to speak and eat. It becomes fatal when they lose their ability to breathe.

"It's one of most horrendous diseases we treat," Kwan said. "It's so wonderful that people are utilizing the Internet and technology to raise awareness for ALS. Every little bit helps."