WILMINGTON, NC (WWAY) - The ice bucket challenge is soaking the nation, but what exactly is ALS?
"Today I consider myself the luckiest man on the face of the Earth,” Lou Gehrig said back in 1939.
You probably have heard Gehrig’s famous career-ending speech. Less than two years later, he died from amyotrophic lateral sclerosis, a neurodegenerative disease that affects nerve cells in the brain and spinal cord.
"Your brain can't talk to your voluntary muscles and control voluntary reflexes like walking, talking, using your arms, using your fingers, and breathing,” Senior Development Coordinator for the ALS Association Jim "Catfish" Hunter chapter, Megan Johnson said.
The disease affects mostly people between 40-60 years old, but it's been seen in people as young as 16.
The average lifespan after diagnosis is just 2-5 years.
Johnson says her grandmother was diagnosed in 2006, and died just four years later.
“I promised my grandmother I would keep fighting in her name,” Johnson said.
But raising awareness turned out to be harder than Johnson thought, until now.
"For years we have dreamed about ALS being at the tip of everyone's tongue, and people knowing what it is, and having heard it, and it's here,” Johnson said.
Johnson says the national organization has a group meeting to decide what to do with the nearly $42,000,000 it has raised in just the last three weeks(as of 8/21/2014).
So far, they have been able to fund 21 additional research studies.