ALS ice bucket funds stay in Augusta

Aug. 20--Brandy Quarles tried to prepare herself by dumping a glass of ice water over her head Tuesday morning.

"It didn't help," she said as she stood shivering outside the Georgia Regents University Medical Office Building, moments after she and seven others in the ALS Clinic had a bucket of ice water dumped over their heads.

The latest iteration of the "ALS Ice Bucket Challenge," where people are challenged to dump a bucket of ice water over their heads within 24 hours or make a donation to fight ALS, has a twist: donations can be made to the GRU ALS clinic and 80 percent of the money will stay in Augusta to help its patients.

Nationally, the ALS Association reported that as of Tuesday, the challenge had raised $22.9 million (compared to $1.9 million over the same period last year) and brought in more than 450,000 new donors.

Amyotrophic lateral sclerosis, or ALS, often called Lou Gehrig's disease, is a progressive disease in which motor neurons in the patient's body slowly die off.

There is no known cure and no good treatment other than supportive treatment. Patients seen in a multidisciplinary ALS clinic such as GRU's do better because the team can spot and head off problems as they develop, and it employs not just neurologists but other specialists including physical therapists, said clinic director Michael Rivner.

"Insurance companies don't necessarily pay for all of that, so somebody has to pay the physical therapists and occupational therapists," he said, which the clinic itself does.

The money also allows the clinic to help patients with other medical expenses that aren't covered by insurance and other costs such as transportation, Rivner said.

The funding, which also is supported by an annual walk that will be held Sept. 27 at Riverwalk Augusta, helps the clinic participate in some trials. For instance, the ALS clinic is about to embark on a clinical trial using magnetic stimulation, Rivner said.

"We had to actually purchase equipment to be in that trial, which is not funded by the trial," he said. "This allows us to do that so we are actually a competitive site in research trials. We've actually this year participated in more research trials than we had previously."

But the clinic is also helping to do basic research into the causes of ALS. For instance, GRU researcher Lin Mei has been focusing on proteins called LRP4 and agrin and antibodies against those proteins that might be implicated in ALS, Rivner said.

"We've actually found a few patients who have this," he said. "This is probably not the cause for all ALS, but it may be the cause for some patients who have ALS."

The clinic also participates in clinical drug trials.

"Obviously, we need a medicine that will substantially slow down this disease," Rivner said. "While patients may be interested in the clinical trials that are being done, I think it is vital that we do basic research to understand what this disease is, because we don't know what the cause of ALS is.

"Until we understand what the cause of ALS is, our ability to treat it is hampered."

And if that means getting a little wet and cold, Quarles, a research associate in the clinic, and her colleagues are willing to do it.

"Hopefully, we can help our patients out with this," she said, still shivering.

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