NEW ORLEANS -- Dr. Amy Guiterrez is a physician at LSU's ALS Clinic in New Orleans.
"We see about 60 to 70 patients that we're actively following. Which means we see patients every three months," Dr. Gutierrez said.
It's where many ALS patients receive speech, occupational and respiratory therapy for a disease that slowly eats away at their bodies while their minds remain active.
"Three-to-five years is about the average life span of patients with ALS. Unless they choose to go on a respirator," Gutierrez said.
There's no known cause and for now, no cure.
Saturday, families battling the disease will gather for the Walk to Defeat ALS in Audubon Park. The goal is to raise money and awareness.
"Currently in Louisiana and Mississippi we have about 288 patients who've been diagnosed with ALS. And most people don't even know what ALS is and how someone is diagnosed with that disease," Paula Shamsie, Executive Director of the ALS Association,Louisiana/Mississippi Chapter said.
The cost of care can be as high as $250,000 annually.
"For an ALS patient you need round the clock care 24 hours. So in many situations, many of your family members become full-time caregivers," Shamsie said.
It's can be a tough financial burden, but the ALS community is close knit. Just this week, former New Orleans Saints player Steve Gleason helped fly an ALS patient from Puerto Rico to New Orleans in the wake of Hurricane Maria. Gleason was one of the first to visit Carmelo Diaz at Ochsner Hospital.
Organizers hope tomorrow's walk continues to spread awareness, walking for those who no longer can stand.