7th annual CEO Soak benefits ALS Association
CEOs don’t wait for things to happen — they make things happen.
That’s what more than 50 executives, along with local business and community leaders, did on Thursday at CEO Soak, the seventh annual ALS Association Western Pennsylvania Chapter’s fundraiser to support the fight against the disease.
Amyotrophic lateral sclerosis is often called Lou Gehrig’s disease, named after the New York Yankee baseball player. It is a progressive motor neuron disease, which gradually robs people of their ability to walk, talk, swallow and eventually breathe.
Approximately 5,000 new cases of are diagnosed each year in the U.S.
The fact that Pittsburgh business executives spent part of their day standing in a fountain at PPG Place in Downtown Pittsburgh getting soaked showed an unwavering commitment, said Calaneet Balas, president and CEO of the ALS Association.
“They took the lead,” Balas said, minutes after getting soaked herself. “Being here says that this matters. They probably looked through their closet and carefully selected a suit or blazer they were willing to get soaked.”
Participants ventured from various professions. Some wore suits, others dresses. One woman was in a gown. Most went with sandals, but a few had business footwear.
Jeannine Schoenecker, former president and CEO of American Refining Group in Bradford, Pa., has worn the same outfit since she first participated in 2019 – a yellow blazer, floral top and gray slacks and sandals. Her husband Brett was diagnosed in 2018. She left her job as CEO and they moved to Middlesex Township to be close to family and medical care.
He died in April at age 61.
“We lived it,” said Schoenecker. “When you get a diagnosis you are in shock. You learn it is a fatal disease. We dedicated our lives to advocacy, because we want a spotlight on this heart-wrenching journey. Every day you lose something, but we tried to keep going and find one good thing each day.”
The pandemic was a scary time and with her husband’s condition even more concerning. They got vaccinated and still did things because “the clock was ticking,” she said.
”I will continue to do this CEO Soak because once you live with ALS, you don’t want anyone to have to go through this,” she said.
The event was inspired by the success of the ALS Ice Bucket Challenge. This year’s CEO Soak raised $308,000 and counting, and $1.1 million since it launched in Pittsburgh in 2017. Across the U.S., it has raised $2.5 million.
Pittsburgh was the first city to do this, said Ryan Reczek, senior vice-president development for the ALS Association.
“Pittsburgh is a trend setter,” Reczek said. “This event helps raise money to fund research, public policy and care services because people diagnosed with ALS need to see many specialists. We work with families to get them the care and services they need.”
And it’s all free.
Executives from Mascaro Family Foundation, Philips, and the Pittsburgh Penguins Foundation took part. Pittsburgh Pirates general manager Travis Williams said he wanted to be part of the CEO Soak because of Major League Baseball’s connection with Gehrig, who was diagnosed at age 36. Additionally, the Pirates have teamed with the Live Like Lou Foundation and the Continental Building Co. to assist the Fox Chapel Area baseball and softball association with renovations including a new playing surface and lights at Emmerling Community Park in Indiana Township.
“This is an important cause,” Williams said. “The Pirates have a strong connection to help support ALS.”
Participants were positioned inside the fountain at PPG Place, which turned on after a short delay. The rain had stopped and the temperature was 72 degrees when the soaking began around 12:30 p.m.
WTAE-TV’s Andrew Stockey emceed the event.
Balas said the goal is to make ALS a “livable disease as we work toward a cure.”
“We are getting closer to that,” she said. “We have gotten new drug therapies. That is huge. If you think that dumping ice on your head and standing in a fountain raising $2.5 million doesn’t do anything, it absolutely does.”
According to the association, it costs people living with ALS more than $250,000 a year just to get the equipment and care they need, not including medications. Funds directly support care services and programs, which are provided free.
Matt Henderson, diagnosed with ALS in 2021, is the retired president of Henderson Construction Fabrics in Harmony. He is the top individual fundraiser for the second year in a row, raising nearly $39,000 this year. His wife Jenn said it’s a beautiful event. They had 140 supporters who donated.
“What the ALS Association does for this community is unbelievable,” said Jenn Henderson, who had tears in her eyes. “The staff is wonderful. The association is our lifeline.”
Matt Henderson, who speaks through an assistive communication device, shared his story. His last meal was on Christmas Day. He’s lost 40 pounds in the past year, but his condition didn’t stop him from getting soaked.
“It is devastating news,” he said. “But we have so many great friends and supportive family. When I think about the great care I have gotten and the support, it means so much. I didn’t realize this time last year how much help I would need.”
JoAnne Klimovich Harrop is a TribLive reporter covering the region's diverse culinary scene and unique homes. She writes features about interesting people. The Edward R. Murrow award-winning journalist began her career as a sports reporter. She has been with the Trib for 26 years and is the author of "A Daughter's Promise." She can be reached at jharrop@triblive.com.
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