Greg Allin, who lives with ALS, and his wife Gail discuss CEO Soak’s campaign
Greg Allin, who lives with ALS, and his wife Gail discuss the ALS Association CEO’s Soak fundraising campaign.
G. Wayne Miller, The Providence Journal
NARRAGANSETT – Before the diagnosis, Greg Allin was a very active man.
He went skiing, hiking, fishing, canoeing, kayaking and surfing. He was a certified lifeguard diver.
With his wife and children, he loved just about everything outside.
Then, in February 2019, he started having difficulty moving the fingers on his left hand.
“I haven’t thought about it too much,” Allin, 59, said in a recent virtual interview with The Journal. “I thought maybe I had a bit of carpal tunnel,” a syndrome involving weakness and tingling that can be caused by the stress of repetitive movements, such as typing.
In June 2019, he visited his primary care doctor who, after learning of the symptoms, referred him to a neurologist. This specialist referred her to another, who diagnosed amyotrophic lateral sclerosis, ALS, an incurable disease of unknown cause that impedes movement, speech and breathing as it inevitably progresses to death, usually in the three to five years after diagnosis.
Depression and denial sometimes follow the diagnosis, which is understandable. Allin’s response was motivation – to do what he could in the time he had left to help support patients and families and advance research into this disease sometimes referred to as Lou Gehrig’s disease, according to the New York Yankees Hall of Fame member who died of ALS. in 1941.
“ALS will kill me eventually, but not today, so let’s do something,” Allin told The Journal.
This summer, that something is CEO Soak, a national fundraising effort of the ALS Association, successor to the Ice Bucket Challenge. The Rhode Island chapter is complete.
“CEO Soak is so important because the only thing that is going to solve ALS is funding and we need that help because we don’t have a lot of time,” Allin said.
“This terrible disease”
Beth Flanagan, executive director of the Rhode Island ALS chapter, said funds raised in CEO Soak will help raise awareness and support services such as “medical transportation, respite care, multidisciplinary medical care at the Louise Clinic. Wilcox ALS, support groups, equipment loans, home visits and more.
They are provided free of charge and help reduce the emotional and financial burden on a family, according to Flanagan. “The average cost of caring for a loved one with ALS is $ 250,000 in personal expenses,” said the CEO. About a hundred patients and families “confronted with this terrible disease” are assisted in the state.
Participating organizations will videotape their events and submit them online by the end of July, Flanagan said.
“The top ten teams will air on NBC 10 WJAR on August 5 for the fundraising grand finale,” she added. “The chapter wants to show the ALS community in Rhode Island and across the country how we can come together as a state to make a difference in the lives of our neighbors who are battling this terrible disease.”
The basic idea of CEO Splash: Employees and others give money in exchange for the ability to turn off a CEO or other leader. Details of how and when are left to the participating companies and organizations.
Gordon Nelson, an executive at CHBC Medical-Dental Consultants in Cranston, is a leader who quickly became involved. Allin was one of the company’s partners until his recent retirement – from the company, not the cause.
“Greg is an inspiration,” Nelson said in an interview. “He was very, very active and his way of fighting back was to get as involved as possible with [an ALS drug treatment] lawsuits and the Rhode Island ALS Association and to help with fundraising and upcoming projects to help others. “
His business plan?
“We had fun with it, taking ideas from the staff on how the soak can go. We’ve had everything from dunk tanks to making sure the water is ice cold, ”Nelson said.
John Pagliarini, president of Providence-based Graphene Composites USA and chairman of the CEO of Soak this year and past chairman of the section’s board, said the research was essential.
“Everything we accomplish in our careers is paltry compared to whether or not we can live long enough to see a breakthrough in the treatment of ALS,” Pagliarini said. “It’s just one of those mysteries that hasn’t been solved yet. And we have so many brilliant minds around the world working on it.
The ALS Association fundraising, he said, has helped make inroads.
“The revenue generated by the Ice Bucket Challenge has really changed ALS research,” he said. “So this year we gave it a little twist and thought there were probably a lot of employees who once in a while wish they could throw a nice bucket over their boss’s head. We were like, “Why not give them the chance and do it the right way? “”
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Peter M. Marino, president and CEO of the Neighborhood Health Plan of Rhode Island, said he also didn’t need any persuasion to participate.
“Whenever Neighborhood has the opportunity to work for a good cause or help improve health outcomes, the team here really comes together and comes together and shakes up,” Marino said in an interview.
The CEO said his organization’s event will take place in a parking lot at his Smithfield headquarters. Plans now include an immersion tank, like those seen at carnivals.
The employees, he said, “will get an opportunity of five dollars for one shot, $ 10 for two shots, to get me soaked. I think we’ll also attract the rest of the management team so that they have the opportunity to not only imbue me, but maybe also imbue one of their own leaders.
“Whatever it takes”
Allin has already been soaked, for a promotional video.
The soaking required some muscle movement, but he told the Journal it faded as he continued to lose weight and had difficulty walking, talking and swallowing. He can no longer dress, cut his own food, open packages or write legibly.
Now he relies more than ever on his family.
“I’m his primary caregiver,” said Gail, his wife of 35 years. “I had a part-time job, which I left.
Her husband’s needs now, she said, are “all things that most people take for granted. You get up, you shower, you shave, you eat, you get dressed – these are all things he needs help with now. He will wake up in the night and he doesn’t have the strength to pull a blanket over him if he’s cold.
Gail spoke of Greg’s toll and “the whole family both emotionally and financially. It’s really hard to watch, but he is a determined soul and he will do anything to help the cause. Whether it helps or if it doesn’t, over time it will help someone else down the road. He will do whatever it takes to get this job done.
Greg said, “ALS is not a person’s disease. It involves a whole family.
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