A week doesn't go by that neurologist Glenn Mackin doesn't diagnose someone with ALS. One was Ruth Lichtenwalner in 2005.
"She could no longer eat. We had to feed her through a feeding tube. Could no longer walk. Had to communicate by writing," said her granddaughter, Holly Bennett.
Lichtenwalner eventually succumbed to the disease, but the experience propelled Bennett to become an ALS advocate.
"For ALS, it's been this unspoken disease. One of the challenges I have when I speak about ALS is to educate them what ALS is," Bennett said.
But the viral phenomenon known as the "Ice Bucket Challenge" has not only raised awareness but also money for the ALS Association. More than $15.5 million has been raised over the past month, compared to $1.6 million during the same time-span last year.
"The cost of an individual patient can be tens of thousands of dollars to a quarter million dollars in care per year," Mackin said.
ALS basically kills a person's muscles but leaves the mind alone. Mackin, who treats patients at Lehigh Valley Health Network's ALS clinic, said the bulk of the money made from the ice bucket challenge will help offset the astronomical costs of living with the disease.
"Power wheelchairs, gracing, respiratory equipment. We're not even talking about ventilators. We're talking about non-evasive things, so people can sleep at night," he explained.
Research is another part of the funding equation. As of now, Mackin said doctors still don't know how the disease kills a person's cells.
As for Bennett, who started the now-annual October ALS walk in the Lehigh Valley, she's hopeful the icy challenge can help answer that question.
"One day won't be ALS, that the research can break through and find a cure," she said.
Allentown, PA 18102