This year, Alexander Marchant will be participating in the Austin Walk to Defeat ALS in partnership with Team Chew Walkas, a St. Louis-based group founded by Drew Barker. Barker — who is the brother of Alexander Marchant Support Specialist Liza Barker and was diagnosed with ALS in 2022 — launched the team as a means to support the ALS Association, a national nonprofit that funds global research and provides assistance for individuals facing the disease.
“My dog’s name is Chew Barker and I’m a bit of a Star Wars fan,” Barker explained. “Everybody knows my dog — he’s a pretty popular guy around here. So we put the name up for a vote and it won by a landslide.” Alexander Marchant is proud to be part of the ALS Association’s first dual-state team and will transfer all funds raised to Team Chew Walkas in St. Louis.
Understanding ALS
First identified in 1869 by French neurologist Jean-Martin Charcot, Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that became widely recognized after the 1939 diagnosis of baseball hero Lou Gehrig. Typically developed in individuals between the ages of 40 and 70, ALS affects motor neurons in the brain and spinal cord. As ALS progresses, those nerve cells degenerate and die — leaving the brain unable to control muscle movement. Those afflicted with ALS eventually lose the ability to walk, talk, eat and breathe. As the ALS Association points out: every 90 minutes, someone is diagnosed with ALS, and someone passes away from it. While there is still no cure for ALS, there are FDA-approved medications that slow its progression — including Relyvrio, which was developed with funding raised by the ALS Ice Bucket Challenge. The average life expectancy for a person with ALS is two to five years, and the out-of-pocket cost for their care is estimated at $250,000.
Drew’s Story
In April of 2021, Drew Barker began to feel tightness in his right hand. “I’d be working and I’d have to shake my hand out, just trying to get it to loosen up,” Barker recounted. The tightness accompanied a muscle twitch above his elbow. “I thought maybe I was getting carpal tunnel or something like that because it was happening when I was typing and working on the computer.” That fall, Barker — who has been a civilian intermittent employee of the U.S. Department of Health and Human Services since 2002 — was deployed on a COVID mission to Alabama. While there, he attempted to cut a cable tie off an equipment case and couldn’t. “I squeezed the cutters and I just could not cut through it,” Barker said. “I ended up using my left hand. That’s when I said, ‘Okay, when I get back, I need to get a doctor’s appointment.’”
After extensive testing, Barker received his final diagnosis in May of 2022. Due to the atrophy in his right arm, he trained himself to use his left. “I basically relearned how to do everything left-handed,” he said. “And then over this past spring I noticed the weakness was starting there.” This past summer, he experienced a fall and dislocated his left elbow. “That left me — as I like to say — unarmed,” Barker said with a chuckle. It also left him dependent on his girlfriend, Jess, to do “pretty much everything” for him.
Barker now wears a carbon fiber orthotic on his right leg to keep his foot from dropping when he walks. “Over all, my walk is not a normal heel-toe walk anymore — it’s kind of a shuffle,” he said. “I can still ambulate, but not what I would consider effectively.” Although there are medical devices and equipment that can help people function better with ALS, they’re costly and not always covered by insurance. Barker was lucky to procure an Obi Dining Robot from the ALS Association. “ALSA happened to have one in their closet,” he said. “It’s this robot arm with a spoon that will feed you. It works — but only with scoopable food. So, it sadly won’t work with something like a piece of pizza.”
“It’s important to have organizations like ALSA that are able to loan people equipment. Insurance will pay for a wheelchair but you can only get one every five years. So the first thing they tell you is, ‘Don’t buy your lightweight $4,000 power chair with your insurance, because when you need the actual big chair, that’s going to cost $40,000.”
Both Drew and Liza Barker are also incredibly thankful for the nonprofit I AM ALS, a patient-led community that provides critical support and resources to those living with ALS as well as their caregivers and loved ones. I AM ALS also connected Barker with Team Gleason — a nonprofit launched by Steve Gleason, a former NFL special teams player for the New Orleans Saints. In addition to purchasing him a lightweight power chair, the organization provided Barker with the Dragon NaturallySpeaking software he uses to dictate emails.
Currently, Barker is treating his ALS with “all three ‘R’ drugs” (Riluzole, Radicava and Relyvrio) and is participating in the HEALEY ALS Platform Trial, a clinical study that aims to accelerate the path to new ALS therapies by testing multiple treatments at once. “I have these packets of weird pellets that I have to take every night. I can’t mix them with water, so I have to chug them down. I can mix them with applesauce if I want to, but I don’t like applesauce that much.”
Barker’s ability to make witty remarks in the midst of a dire situation is incredibly inspiring — as is his dedication to supporting others by using Team Chew Walkas as a platform to fundraise for the ALS Association. We sincerely hope you’ll consider supporting this vital organization leading the way to a cure by donating to a member of Team Chew Walkas, purchasing our Team Chew Walkas merch, or joining us in person for the one-mile Austin Walk to Defeat ALS on October 21.
Walk with Us
Austin Walk to Defeat ALS: Check in at 9 a.m., walk at 10:30 a.m. Saturday, October 21, Concordia University Texas, 1400 Concordia University Drive. Register by clicking here. For details, contact Morgan Mix by emailing morgan.mix@als.org or calling (210) 966-9269.
