Letter: ALS voices heard loud and clear

When the hosts of the “Mayhem in the AM” radio show in Atlanta mocked former Saints player Steve Gleason’s battle with Lou Gehrig’s disease, they didn’t just anger the ALS community, they sparked a conversation that obviously needed to happen in Georgia, Louisiana and across the country.

ALS is a progressive, fatal neuromuscular disease that affects voluntary muscle movement, robbing patients of their ability to walk, speak, swallow or breathe. There is no effective treatment and no cure. After diagnosis, the typical life expectancy is two to five years.

As devastating as this disease is for patients and their families, many people are uninformed about ALS. The Atlanta radio show hosts proved this fact with their “jokes.” There is no doubt about it — we need to help people understand this disease.

ALS is often considered an uncommon, “orphan” disease, but the reality is much more complicated than that. According to prevalence rates, there are approximately 320 pALS (persons with ALS) in Louisiana. These numbers may seem low, but consider this: every 90 minutes, someone is diagnosed with ALS, and every 90 minutes, someone dies from ALS. There are no survivors.

So how can we raise awareness of ALS? We must give a voice to those who live with the disease and those who they leave behind.

The ALS Association Louisiana-Mississippi Chapter does this through its in-home consultations, support groups, a durable medical equipment loan closet, respite for caregivers — a multidisciplinary clinic, advocacy, public education and support for international research efforts. The ALS Association is the only nonprofit organization solely dedicated to fighting Lou Gehrig’s Disease on every front.

By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, the association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.

Our biggest fundraiser — and best awareness tool — is the Walk to Defeat ALS, which is held in Baton Rouge, New Orleans, Lafayette and Shreveport. This event gives a voice to the hundreds of families in Louisiana who have watched a loved one lose everything to this disease.

Our pALS are just like Steve Gleason. They have families. They have friends. They have talents. They have dreams. And they have hope for treatment and a cure. Let’s continue the conversation and ensure that pALS and their families have a voice until that day comes.

Kelly Viator, executive director

The ALS Association, Louisiana-Mississippi Chapter

Baton Rouge