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.
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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.
Question | How did these strolls get into an annual stride?
Answer | Since 2010, when we started based our of Charleston, our first walk was in the Upstate, and we kind of branched out from there.
Q. | Has this walk in Myrtle Beach become an annual tradition, even a reunion of sorts?
A. | Definitely; we get a lot of the same folks who come back year after year, even after their loved ones have passed away. We have a lot of returning families; it’s nice to see them every year, and keep that connection with everybody.
Q. | How are these walks at four points across the Palmetto State, a valuable way to increase awareness about ALS, maybe in a more fun, quality time of way?
A. | These are actually are a nationwide signature fundraising event. ... It’s a real good way to spread awareness. ALS is not friendly at all. We try to have a lot of fun at the walks and make it an uplifting day. We want to do something positive, and bring awareness to more people.
Q. | With medical attention and research, what new developments have made headway into combating ALS?
A. | Our chapter doesn’t specifically fund any research programs, but on a national level, we do; it’s all peer reviewed. ... We look at research programs happening around the world, and we fund the ones we hope bring the most promising results, ... and fund all of the clinical trials we can – that’s something we really push for. ...
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.
Q. | What statistics have gotten more positive since Lou Gehrig’s time?
A. | We’re actually coming up on the 75th anniversary of his famous speech in July, and on a national level, the ALS Association is rolling out a campaign of this 75th anniversary. There has definitely been progress in research, ... but as of right now, we don’t know what causes it, and we have only one drug on the market, which might increase someone’s life by about three months .. and it has heavy side effects. ...
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.
Q. | What aspects about ALS need more clarifying and reassurance for, and more understanding by, people?
A. | One of the most important things is that is doesn’t affect a person’s mind, so as their body is wasting away and losing movement with the ability to eat .. and breathe, people think there’s something mentally wrong with them. ... They are fully aware; they know it’s coming when they get their twitches; they know exactly what’s happening to them. They’re fully aware of what’s going on. ... You still have your mind, and you can still communicate through devices.
Q. | Any other special chapter events happen the rest of the year, outside of the walk?
A. | We have a support group in Myrtle Beach that meets at Socastee United Methodist Church at noon on the second Saturday every month, with the same facilitator, a volunteer of ours; her husband passed away from ALS several years ago, and he had it before there was an ALS chapter here. ... She has been awesome. ... We’d like to start a second support group in the area to share what we do. ... We have a new ALS team that markets some of the services we provide, and we have a social worker on staff who works with families, who helps pairs them up with what they need ... to go through the ALS “journey,” as we call it. It’s such a process. ...
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.