Posted 7/29/21

By ARDEN BASTIA Warwick resident Robin Ramos says she doesn't want anyone else to deal with "[the] horrific disease" that is ALS. An ALS patient and community advocate with the ALS Association of Rhode Island, Ramos isn't letting the disease stop her.

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Warwick resident Robin Ramos says she doesn’t want anyone else to deal with “[the] horrific disease” that is ALS. An ALS patient and community advocate with the ALS Association of Rhode Island, Ramos isn’t letting the disease stop her.

Ramos joined Neighborhood Health Plan employees and leaders last Friday at their office in Smithfield for the state’s first CEO Soak, and then joined Mayor Frank Picozzi, Police Chief Bradford Connor, and Fire Chief Peter McMichael at Fire Station 1 as they got soaked Tuesday.

CEO Soak is a corporate version of the well-known ice bucket challenge that aims to raise awareness and funds for those with ALS. This is the event’s inaugural year, and the CEO Soak campaign has raised more than $90,000 for the association.

Ramos was diagnosed with ALS, or Lou Gehrig’s disease, in 2017 a few days before Christmas.

“It was shocking. It was never on the table with the doctors,” shared Ramos in an interview Friday.

About a month after her diagnosis, Ramos found services and support through the ALS Association of Rhode Island, and has remained active in the organization since. She acts as a liaison between communities and the ALS chapter to provide advocacy and awareness through fundraising efforts.

“They’ve been like a second family to me,” she said. “I’ve been given a platform to advocate for myself and others who are affected by this horrific disease.”

The typical life expectancy of those with ALS is two to five years, and this Christmas Ramos is entering her fourth year with the disease.

“I feel very fortunate,” she said of the milestone, noting that she still has some mobility and can get around. “I am very, very grateful.”

Ramos, at the Neighborhood Health Plan event, said it warmed her heart to see folks coming together for a good cause.

“All of these people have come out to raise funds for the association and it’s very touching. These people don’t know me, they don’t know patients who are working with the ALS Association, but they’ve taken the time to create this wonderful event to raise a tremendous amount of money. I feel very blessed,” she said.

It was not only a chance to dunk their bosses, but for Neighborhood Health Plan employees, this was the first event the company held since the COVID shutdown in March 2020.

“We thought it would be very motivating for folks to have the opportunity to dunk the leadership of the organization,” shared Neighborhood Health Plan of Rhode Island CEO Peter Marino during. “It’s going to be a terrific day for a terrific reason and I’m looking forward to a lot of them missing the target. I think we’re going to raise a lot of money.”

Marino was right. Neighborhood employees raised more than $6,000.

Marino was just one executive leader who got dunked. David Burnett, chief growth officer, Doug Byrd, chief administrative officer and senior VP, and Leslie Taito, chief of staff, also donned floaties and swimsuits, and got dunked in a dunk tank by team members.

“We’re very, very lucky to have leaders invested in this cause,” shared Ramos. “I’ve met with Senators and Congressmen and we’re very grateful to have their support.”

It was perfect weather on Tuesday, when firefighters opened a ladder hose to soak Picozzi, Connor, and McMichael.

Mayor Picozzi’s fundraising goal was $2,500, but raised $3,845 for the cause.

About 20 percent of the patients that the ALS Association of Rhode Island works with reside in Warwick, according to the state chapter’s executive director, Beth Flanagan.

“It’s really incredible to see our leaders here in the city come out and do whatever it takes to bring awareness to this cause,” she said.

During Tuesday’s event, John Pagliarini, board member and former chair of the state’s ALS Association, said events like the CEO Soak campaign are “meaningful to so many people. It’s so expensive to take care of an ALS patient, and we help underwrite many of the costs associated with that, not just for the patient but for the families as well.”

Pagliarini also shared that the chapter has exceeded their fundraising goal of $75,000 and with six days of the challenge left hopes to top $100,000. The CEO Soak campaign runs until August 5.

“Over the last month, we’ve had two private citizens launch rockets into space. If we can accomplish that, if we put our minds and money towards something like ALS, I think we can accomplish the possibility of finally curing a disease that has been around since 1869,” he said.

soak, ALS


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