Like everyone else, Lewis Duvall of Greensboro watched the videos of people dousing themselves with frigid water last year as part of the ALS Ice Bucket Challenge to help raise money to find a cure, little realizing how significant that funding would become to him now.
“I never imagined I would have ALS,” he said, while sitting in a wheelchair at the ALS Clinic at Georgia Regents Medical Center.
Amyotrophic lateral sclerosis or ALS, often called Lou Gehrig’s disease is a progressive disease where the patients motor neurons slowly die off and rob them of function. There is no cure yet and the Ice Bucket Challenge was looking to help spur more research into that.
The challenge continued again last month to much less fanfare than the year before, when videos of people dousing themselves in creative and sometimes painful ways went viral and brought in at least $220 million globally from hundreds of thousands of new donors to the ALS Association.
The ALS Clinic at GRMC brought in $145,000 that allowed it to not only pay for services but spurred on research in Augusta, Clinic Director Michael Rivner said. A walk will be held Sept. 26 at Riverwalk Augusta as a fundraiser for the clinic.
Much of the money raised covers treatment patients get that insurance companies won’t cover, such as evaluations by physical and occupational therapists, as Duvall got during this visit.
“We’re a multidisciplinary clinic and we try to cover any of the problems that a patient with ALS would have,” Rivner said. “Insurance companies don’t often pay for screening visits. We have to actually hire people to spend time with our patients.”
Those evaluations can pick up problems that might benefit from early treatment and improve patients’ lives, he said. The money also helped fund “quite a bit of basic research” in Augusta at Georgia Regents University, Rivner said. Working with Dr. Lin Mei, it was focusing on proteins called LRP4 and agrin, that seem to be involved in intercellular communication between muscles and motor neurons, Rivner said.
“For the cells to work properly in the nervous system, one cell needs to talk to another,” he said, and the disease may result from a breakdown in that. It is a potentially exciting discovery but “very preliminary,” Rivner said.
Still, that kind of basic research into the disease and its progression is starting to change the way ALS is perceived, he said.
“In the past, we basically looked at it as one disease and we’re going to lump every patient together in this one disease category,” Rivner said. “That might have been a mistake.”
Being able to find things that separate one ALS patient from another could lend itself to more tailored and targeted treatments, he said.
“Hopefully, we’ll be able to tease this stuff apart and we’ll be able to find some effective treatments because obviously we would like to see a breakthrough in this disease,” Rivner said. “It is not easy for me as a physician to diagnose patients and then watch them go downhill with limited things that we can do.”
That is certainly the hope of the Duvall family. His problem began with weakness in his left foot and leg.
“You would never think that not being able to wiggle your big toe would lead to something like this,” said Selena Duvall, his wife. Eventually, he was referred to Rivner and the ALS Clinic and formally diagnosed last June. Now the family is following the research and some breakthroughs made possible by that funding surge last year.
“It feels like it is moving in some direction,” Lewis Duvall said. “It does give you some hope, anyway. Maybe there is some progress there.”