PROVIDENCE – This isn’t the first time J.R. Pagliarini has had someone dump a bucket of ice water on his head.
And it probably won’t be the last time.
The former president of the ALS Association Rhode Island Chapter, and current president of Graphene Composite Ltd., is willing to do just about anything to fight ALS, a devastating disease also known as Lou Gehrig’s Disease.
On Thursday, he kicked his shoes off and sat down in a chair outside the Wexford Innovation Center at 225 Dyer St. surrounded by three happy GC employees with buckets of ice water as part of a reimagined Ice Bucket Challenge called the CEO Soak.
Mother Nature did her part with highs in the 70s and a cool breeze.
Then all at once, they doused him.
The same scenario occurred at GC subsidiaries in the United Kingdom and Norway.
The intimate event featured three CEOs whose offices are inside the Wexford building. One after another, they each took a seat for a good cause. Not a single person flinched.
Rebecca Webber, general manager of the CIC Providence, which manages the Wexford building, and Pieter Nyhuis, a technical recruiter at Connexion Systems and Engineering, who sat in as CEO for the day, were soaked along with Pagliarini, and numerous other Rhode Island CEOs this year.
John Godin, a chairman for the ALS R.I. Chapter, said the organization set a goal to raise $75,000. Twenty-four teams and more than 100 individuals have raised more than $105,000.
Pagliarini has been a warrior for the ALS Association R.I. Chapter for 23 years.
There is currently no cure for the disease that gradually paralyzes people because the brain is no longer able to communicate with the body’s muscles, according to the ALS Association. Over time, the body deteriorates, and someone living with ALS loses the ability to walk, talk, eat, swallow, and eventually breathe.
About 80 percent of people with ALS die within two to five years of being diagnosed, the ALS Association reports.
Pagliarini said while getting soaked with buckets of ice water seems like an awful prank, it’s nothing compared to what patients with ALS endure. The Ice Bucket Challenge, and now the CEO Soak, have been a godsend for ALS researchers.
The first Ice Bucket Challenge was popularized by Peter Frates, a Boston College baseball star, who turned his diagnosis at 27 years old into a viral fundraiser in 2014. It raised about $115 million in donations, increasing funding for ALS research around the world by 187 percent, the ALS Association reported. Frates died at 34.
Since 2014, it has inspired more than $220 million in support worldwide.
Pagliarini became a chairman for the ALS Association in Rhode Island after a friend, whose dad died of ALS, asked him to join the board of directors.
“The devastation of the disease, the severity of it, it’s just as inhumane if you can imagine, and there really hasn’t been much progress, since it was discovered in 1869,” Pagliarini said. “We have a dual effort here: one is to raise money to help people currently fighting ALS and their families, and also to expand research into finding the cause for ALS.”
Pagliarini said there is a local effort to fight the disease. Four research studies are underway at Brown University.
This is Pagliarini’s last year on the ALS R.I. Chapter board of directors. He stepped down in March after serving as president for 18 years.
“I knew I didn’t want to just lend my name,” Pagliarini said. “I wanted to put my full faith and effort into the cause. Because this is one of the worst diseases anyone could ever imagine.
“The Ice Bucket Challenge has raised approximately $225 million worldwide, but it costs about $2 billion to get a drug from research and development to a patient’s bedside. So no pun intended, but the Ice Bucket Challenge was a drop in the bucket to how much it really costs to get pharmaceutical to a patient.”
Pagliarini said there are roughly 30,000 people worldwide with ALS at any given time. About 5,000 people in the US are diagnosed each year, and the incidence is about two per 100,000, the ALS Association reports. About 90 percent of cases occur without a family history.”
Godin said funds raised from the CEO Soak in Rhode Island are for the purpose of care services for ALS patients, support for families, advocacy, and clinical help to support patients.
Godin said the Ice Bucket Challenge and related events have boosted the visibility of ALS, and led to breakthroughs in the treatment of the disease.
“What’s happened in the last few years is there’s been a number of new medications or treatments that help slow the progression,” Godin said. “We never had that 10 years ago. My mother when she passed away in 2018, those experimental drugs weren’t available for her.
“But now patients – some of our biggest advocates – are on that treatment, and it seems to be helping their quality of life.”