Those living with the disease no longer feel they are living in the shadows.
For Steve Pronko, taking the Ice Bucket Challenge takes a lot longer than the millions who have before him.
His care giver, Antonio, has to carefully push him onto the back porch and get him out of his chair.
Just last year, Pronko was walking and breathing on his own, with his son A.J. by his side. He explains what ALS has done to his body.
"What you did yesterday you might not be able to do next week and it's always a constant battle with accepting that you've lost something else," Pronko said.
Once an E.R. nurse, Pronko now needs around-the-clock care, with two nurses taking shifts.
The ALS Association's care services coordinator for southwest Virginia, Jennifer Mundy says this disease is unrelenting.
"It's a disease that just takes and takes from people. Today you can walk, tomorrow you can't. Today you can eat your food, tomorrow you can't," Munday said.
The cost of care is one of the greatest concerns for families dealing with the disease. Care similar to what Pronko receives can be as much as $200,000 per year.
Munday says money donated to the local chapter of her organization through the Ice Bucket Challenge helps pay for care and equipment for around 50 people in southwest Virginia suffering from the disease.
As for Pronko and his son taking the challenge, they the response on social media has really touched him.
"The ice bucket challenge has brought awareness, awareness brings money, money brings research, and research finds a cure,' Pronko said.
A cure for disease that's sentenced him to a life in his chair.
To make a difference for people with ALS in our area, you may donate to the southwest Virginia chapter of the ALS Association.
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