TownTalk: ALS United NC Helps Those With The Disease
Dave Shore and WIZS’s Bill Harris have some things in common: They both have had media careers – Dave as one of the founders of 99.9 The Fan in Raleigh back in 2007, and Bill behind the mic right here at the radio station, for one. But more importantly, both are interested in helping others manage what, at best, is a life-altering diagnosis.
Shore was busy with TV sports career back in 1991 when his mother was diagnosed with ALS, and he said he wasn’t able to provide the care for her that he would have liked.
As president and CEO of Raleigh-based ALS United NC, however, Shore said he considers “this is my time to help my Mom…to help others.”
Today, Harris can count himself in that group. He was diagnosed last week.
“I’ve got it. I have to deal with it,” Harris said. “If doing a show can help someone else, I’m all for it.”
And so, that’s just what he did.
Shore joined Wednesday’s TownTalk segment by telephone from Washington, DC, where he and others are meeting with North Carolina legislators to talk about ways to help fight ALS.
“I’m leading a major Mission First organization,” Shore said. ALS United funds two grant streams – one that goes to patients to pay for things not covered by insurance – and the other that provides grant funding to the six clinics set up across the state to help ALS patients.
The two closest are at Duke and UNC, he said. These multi-disciplinary clinics are a one-stop shop of sorts to help patients see various specialists during the course of a day visit.
It’s a lot easier to go with the acronym ALS or Lou Gehrig’s Disease than it is to say Amyotrophic lateral sclerosis (a-my-o-TROE-fik LAT-ur-ul skluh-ROE-sis), and Shore said diagnosing the disease can be as complicated as trying to pronounce the medical term correctly.
Basically, what it’s doing is breaking down motor neurons in your body and robbing your body’s ability to get signals from the brain, Shore explained.
“It’s a hard diagnosis to make,” he said, and it often takes a long time.
There is reason for hope, however. Between advances in research and drug trials, neurologists have more tools to improve patients’ lives.
The ultimate goal, of course, is to find a cure. In the meantime, organizations like ALS United continue to work to make patients’ lives better.
“Our main goal is to take care of our patients. We don’t do the research, but …partner with the ones who do to keep it going,” Shore said. “They’re smart people,” he said of the researchers, “and they’re going to find the right combination.”
Similarities between ALS and other neurological diseases ranging from Alzheimer’s to Parkinson’s are desperately underfunded. But Shore said if ALS researchers have a breakthrough, it likely would carry over into treatment of the others.
Remember the ALS Ice Bucket Challenge that went viral 10 years ago? “We’re going to do it again,” Shore said. “We need that influx of dollars.”
He’d like to think that a treatment for ALS, now considered a progressive, degenerative disease, will come along, much like the drug cocktail that has essentially made HIV a disease that patients can live with.
“It became a survivable diagnosis,” he said.
There are so many trials and so many drugs that people are being put on to see if the progression can be slowed down.
Shore’s mission is to find a way to live with ALS. “It’s kind of what fuels me,” he said. “That I get this information out and help as many people as I can.”
Visit https://alsnc.org/ to learn more.
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