For this cause, every step taken helps in hitting a home run in awareness about amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease, named after a famous New York Yankee slugger from the 1920 and ‘30s.
This malady, once diagnosed, takes a progressive neurodegenerative path, affects nerve cells in the brain and spinal cord, giving the person an average 2-5 years until death.
The ALS Association S.C. Chapter will have its annual Grand Strand/Pee Dee “Walk to Defeat ALS,” at 10 a.m. Saturday. Individuals and teams are invited for this 3-mile walk, not race, in Myrtle Beach’s Grand Park, across from The Market Common. No entry fee is collected, but Katie Shank, special events coordinator for the ALS chapter, based in Charleston, said the charity is self-funded solely through donations.
“The walks are our bread and butter,” she said.
Shank also said this annual walk kicks off four such events spread across the state this spring. The other walks are, for the Lowcountry, March 29 in North Charleston; Upstate, April 26 in Simpsonville; and Midlands, May 3 in Columbia.
We have a national registry ( www.alsa.org/als-care/als-registry/), where people with ALS can go online and fill out a series of questions that ask about their jobs and certain things they’ve been exposed to. ... We don’t know what causes ALS. We’re just finding a connection through the registry, and doctors can do clinical trials and reach out through the registry and are able to tap in to the registry. ...
We’re considered a rare disease, and in our chapter, we have about 200 patients we serve, but we have about 450 people in the state who don’t know about us. Our numbers are about the same people with multiple sclerosis, but our people don’t live as long as those with MS.
There have been a lot of strides in kind of determining the genes that might affect someone with familial ALS; 10 percent of the cases are what we call familial ALS. In most cases, ... it’s sporadic ALS. ... The most progress has been made in technology, and at least our patients can get power wheelchairs and communications devices to enhance their quality of life.
We have some other smaller events, but these walks for ALS are the biggest. Just to come together with other families is so important, so helpful to families. This is such a great way for our families to get together and know one another, and to know there are people out there who are trying to do something.