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Longtime news anchor Larry Stogner always made a point to raise money for difficult medical conditions, but little did he know he would one day be diagnosed with one.
During the 39 years that Stogner, 68, reported for Raleigh, N.C.’s ABC11-WTVD, he participated in the annual Jerry Lewis MDA Labor Day Telethon to raise money for the Muscular Dystrophy Association. In 2014 he took part in the ALS Ice Bucket Challenge, which went viral and helped the ALS Association raise over $115 million in donations for amyotrophic lateral sclerosis (ALS) research.
“I interviewed a lot of ALS patients along the way, and I would always come away saying, ‘Jeez, I’m glad I’m not that guy.’ And now, I am that guy,” Stogner, who served as the station’s evening news anchor for about 32 years, told FoxNews.com.
Stogner was diagnosed with ALS, also known as Lou Gehrig’s disease— the condition Stephen Hawking has coped with for over 50 years— on Tuesday, Jan. 13. The signs appeared nearly a year earlier, when he began to notice words that used to roll off of his tongue didn’t anymore. When speaking with his wife became more difficult, he saw a speech therapist, and then later a neurologist when communicating became increasingly taxing.
Doctors conducted an electromyography (EMG), during which they hooked up needles and electrodes in his neck and forehead to analyze neurological activity. They were looking for markers of ALS, a progressive neurodegenerative disease that leads to loss of muscle control and movement. ALS is rare— it impacts an estimated two per 100,000 people in the United States— and affected people live, on average, about two to five years after diagnosis, according to the ALS Foundation. There is no cure.
“That’s when they came up with the diagnosis,” Stogner said of the EMG test. “It was like getting shot between the eyes hearing those words.”
Living with ALS
Stogner shared the news with his coworkers about a week after being diagnosed, and he told his viewers about it on air during his regular broadcast on Friday, Jan. 23. Stogner began his career in broadcast journalism at UNC-TV after serving in the U.S. Air Force in Vietnam, and getting his bachelor’s degree in journalism at the University of North Carolina in 1969. He joined the team at ABC11 in 1976 and became the 6 p.m. news anchor in 1982.
“Boy, we’ve seen a lot of change over those years,” Stogner said during the broadcast when he announced his diagnosis, “but we have to stop meeting this way.”
Stogner breaking the news live and on air— just as he had while reporting onsite in Haiti after the devastating 2010 earthquake, and in 2002 with the U.S. Army’s 82nd Airborne Division in Kandahar, Afghanistan— was only natural, his colleagues said.
“Credibility and honesty are the foundation of what we do, and how we conduct our business and our lives, and I think he felt it was important to be straightforward with our viewers,” ABC11 anchor Steve Daniels, who has taken over the 6 p.m. slot for Stogner, told FoxNews.com.
About 350,000 people saw the video on Facebook at the time, Stogner said, and media across the U.S., as well as in Belgium, Australia, Poland, and France picked it up. Meanwhile, books, prayer shawls, and other gifts from the generations of viewers who grew up watching Stogner poured in.
“I can’t tell you how many people said it made them cry, and that was not my intent,” Stogner said. “Some people keep using the word ‘courage’ about the way I did it, but the truth is I really didn’t know any other way to do it other than to be totally up front … it would have been very classless to leave and not say anything about it. I felt like I owed it to my loyal viewers.”
Stogner retired from his post immediately following the announcement, but he’s technically on a one-year paid leave of absence, during which he’s trying to cram 10 years of travel plans with his wife, Bobbi, into only two years as his speech and movement decline. In May, they traveled to Italy and saw Mount Vesuvius and the Amalfi Coast, and later they went to California for their son Patrick’s graduation from Chapman University. The Stogners have six children and seven grandchildren. Next, they are leaving on a 14-day Viking River Cruise to Budapest, Hungary and Amsterdam.
“I had planned to work for three more years, but [ALS] changed all of that,” Stogner said.
Today, about five months after being diagnosed, Stogner has trouble with speaking, swallowing and sometimes breathing, which are common early symptoms of ALS.
“But I can still hit a golf ball as far as I ever did, and I have no trouble walking. I’m still nimble,” he said.
Staying in the spotlight
When Stogner isn’t traveling and playing golf, one of the ways he spends his time is by raising awareness and research funds for the very disease he is battling.
Jerry Dawson, president and CEO of the Jim “Catfish” Hunter Chapter of the ALS Association in North Carolina, had lunch with Stogner shortly after his on-air announcement.
“Many people choose not to be in the public eye after [receiving] an ALS diagnosis, which is perfectly normal and understandable,” Dawson told FoxNews.com. “I didn’t want him to feel any pressure. Even though he could raise a lot of awareness with his public position, we have to respect his wishes.”
“He looked at me and said, ‘I owe it to my fan base to be transparent— let me know how I can help. I’ll do whatever I can,’” Dawson recalled. “It was just amazing.”
Stogner and about 100 of his supporters participated in the 2015 Triangle Walk for ALS in Raleigh on Saturday, April 4, and their team— Stogner Strong— raised over $21,000. The group also made a donation of $5,000 to the Tobacco Road Marathon & Half Marathon in North Carolina in Larry’s honor.
In May, Stogner and an ABC11 camera crew traveled with the North Carolina chapter of the ALS Association for the 2015 National ALS Advocacy Day & Public Policy Conference in Washington D.C. to meet with Congress about research funding, the National ALS Registry and the 21st Century Cures Act, as well as a potential bill that would protect access for speech-generating devices.
“[Larry] has such a legacy here that he can knock on the doors of our congressional delegation and get a meeting with them,” Daniels said. “He’s that extra push this cause needs to really reach the next level in funding and research, and, ideally, to find a cure.”
Stogner is participating in research at Duke University, in Durham, N.C., where engineers and scientists at the Duke ALS Clinic are developing a system involving eye scans and analyzing electrical activity. The technology would serve people who have lost speech and muscle movement due to conditions such as ALS, cerebral palsy, autism, and multiple sclerosis.
“We’re trying to work toward making the system robust, easy to set up and reliable, in hopes that it can be used by people who don’t have any other form of communication,” Kevin Caves, a clinical associate in medicine, surgery and biomedical engineering at Duke University, told FoxNews.com. “The real intended population is people with no communication, [or] a term [doctors] call ‘locked’— they don’t have physical ability to move and don’t have communication.”
Stogner is also in the process of banking his voice in hopes of using the recordings later when he has lost the ability to speak. He spent nearly eight hours reciting 1,600 sentences into a microphone that was hooked up to his computer. Next, his voice will be synthesized, and the recordings will mimic his dialect and tone. The speech would sound similar to his natural voice and not robotic, unlike the technology Stephen Hawking uses.
“[Larry] was an anchor, so he has catchphrases— and [saying,] ‘I love you’ to his family, and calling his dog, talking to his grandkids— these are audio clips that can then be put into a commercially available communication device, so when he hits the button to choose the phrase, it will play the phrase versus text to speech,” Caves said.
“A number of people who did this wait too long,” Stogner said, “so I decided to go ahead and do it early when my voice was stronger and my speech was more coherent. I’m almost certain I will need it one day.”
When Stogner reflects on his career as a journalist, the two things he loved most were traveling for ABC11 and coaching young reporters.
“Doing pieces far off, whether they be political or military— I’ve done a lot of both— covering conventions, primaries in New Hampshire and Iowa, and things like that: That, to me, was fun,” Stogner said. “Reporting is what was fun to me and enjoyable, and this way you can be the most, by far, creative. It’s nothing like having total control over the stories you’re reporting.”
During his time at ABC11, Stogner mentored the late Stuart Scott, who was an ESPN anchor for “SportsCenter,” as well as Byron Pitts, who is co-anchor of “Nightline” and an ABC News correspondent.
Pitts, who was an intern at ABC11 from 1980 to 1981, was making coffee until Stogner took him under his wing.
“One of my proudest moments was when Larry let me write one of his stories— a 20-second piece. It was something in the state legislature,” Pitts told FoxNews.com. “It was probably four or five sentences, but he let me write it, and we talked about it and edited it, and he read it on air.”
When news directors questioned why Stogner would bring Pitts along for stories interns normally wouldn’t, Stogner remained adamant about doing so.
“[Larry] was supportive. Demanding,” Pitts said. “He allowed me to romanticize what broadcast journalism can be and should be, and that I could do it.”
Daniels worked alongside Stogner for 16 years, and when he arrived at the station, his first impression of the former anchor was that he was a native son of North Carolina— and that the community confided in him.
“The viewers had an affinity for him, and he was a very trustworthy journalist— he covered politics and covered the world, and brought those stories home to North Carolina in a meaningful way that made the stories make sense, and put it in context for the viewers at home,” Daniels said.
Neither Daniels nor Pitts said they were surprised that Stogner has decided to be vocal about his ALS diagnosis, and help raise awareness and research funds for the disease.
“What I love about what Larry said is, ‘This is his job now,’” Daniels said. “His job is to raise awareness, and I really admire that … that it’s not going off and enjoying golf or retirement … he really feels like this is a calling.”
“Larry Stogner fought for me,” Pitts said, “so it doesn’t surprise me he’d fight for himself and fight for a cause he believes in.”