Merry troupe of Santas make it fun to fight cystic fibrosis, honor Finnegan

By Kelcy Dolan
Posted 11/19/15

Can you party like Santa? Across the globe, in more than 400 cities, people attempt to do just that at SantaCon and for the 5th year in a row SantaCon Newport will challenge Rhode Islanders to party …

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Merry troupe of Santas make it fun to fight cystic fibrosis, honor Finnegan

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Can you party like Santa? Across the globe, in more than 400 cities, people attempt to do just that at SantaCon and for the 5th year in a row SantaCon Newport will challenge Rhode Islanders to party like the jolly old man himself on Saturday, December 5th.

SantaCon is a daylong event where participants dress in a full Santa or holiday themed costume, touring the restaurants and bars in any particular city, participating in “reindeer games” and raising money for local charities.

SantaCon began in the early 1990’s in San Francisco, coming to the East Coast, New York City in 1998. Since then more and more SantaCon events have popped up around world.

The “Santa convention” came to Newport five years ago after Nancy Rafi and Kerry Burns attended SantaCon in New York City, they both felt the event would be a natural fit for Rhode Island.

“It has taken on a life of its own now,” Kerry said. “Kids love it, their parents do too. With all the Santas people will stop their cars in the middle of the street to take pictures with us.”

In the past few year’s New York’s SantaCon has become infamous with the community speaking out against nearly 60,000 Santas traversing and partying through the city. SantaCon Newport that has averaged 100 to 150 Santas each year is something different.

“We really partnered with the community for this,” Nancy said. “They have come to embrace it. They support it and often get involved themselves. There’s a lot of energy and people love it.”

With so many dressed in holiday costumes Nancy explained that the event garners a lot of attention. The Santas often carry a small bag of toys or candy to pass to the children along the way, people take pictures with passer bys, singing Christmas carols to residents and “spreading cheer” all day long.

Nancy said Newport’s SantaCon concentrates more on the charity aspect of this event, hosting raffles along the way and a toy drive for Toys for Tots.

Money raised goes to Finnz Fundz, a Warwick based non-profit Kerry and her husband Patrick began in 2011 after the loss of their son Finnegan to cystic fibrosis.

Cystic fibrosis is a genetic disorder in which the lungs and sometimes the pancreas, liver, kidneys, and intestines where the body produces unusually think mucus that clogs airways and stops natural enzymes from breaking down and absorbing food. Nearly 30,000 people throughout the Unites States suffer from cystic fibrosis.

Before his passing in 2009 at the age of 4, Finnegan was in the hospital for more than a year, both of his parents leaving their jobs to be by his side.

As a social worker, Kerry looked for resources, services that could help her family during this tragic time, but found nothing. Both decided that no matter what the outcome would be, together Patrick and Kerry would begin an organization that would be able to provide support for individuals and families battling cystic fibrosis.

Most funds privately raised go towards research on cystic fibrosis and families are left often struggling financially.

In the past five years Finnz Fundz have been able to help 30 families in 23 states, focusing their efforts on basic living expenses, groceries, house and car repairs, or even relocation services for those waiting a transplant.

The all-volunteer organization is all volunteer based and has been working through word of mouth in the cystic fibrosis community. Often when a family seeks help, Finnz Fundz can have a check in the mail within a week, only needing proof of a cystic fibrosis diagnosis.

“When you are in an emergency and you need money, you need money. You can’t wait to go through an application then wait for a deadline,” Kerry said. “We understand what it’s like to go through this; how hard it is to ask for help, so we can offer support.”

Patrick said after more than a year in the hospital with Finnegan they saw just how many people in their same situation didn’t have the support systems the Burns did.

“When we were battling with Finnegan’s cystic fibrosis our family and friends really stepped up. So many don’t have that, they had no one to turn to,” he said. “If we didn’t have the support we did six years ago we wouldn’t be in the position now where we can do this. Now it’s our time to give back.”

Patrick said the non-profit is cyclical those families that are helped through Finnz Fundz often give back to the charity once they are in a position to, grateful for the emergency help.

Nancy said, “When you have a child in need all your attention goes to making them healthy. You can’t be worrying about if you’ll make your rent that month.”

Each year SantaCon helps to raise a few thousand dollars that goes straight to Finnz Fundz, participants often being more generous than the fundraiser asks for.

Kerry explained it was important to her and Patrick that all the fundraisers for Finnz Fundz be light at heart.

“Especially after a life event like this it’s important to still live and have fun,” she said. “People can get mired in the muck of this topic. We want to bring cheer while helping others, while helping a cause near and dear to our hearts. Plus, who doesn’t love to get dressed up?”

Nancy, Kerry and Patrick all agreed that each year the costumes get more “hardcore”, and joked that those participants who try and get away with just a Santa hat are often heckled for lack of participation. There are dance competitions, sack races, and “other shenanigans” throughout the event.

SantaCon Newport will be on Saturday, December 5th; all ages are invited to attend the event, which begins at noon at Washington Square, Touro and Broadway in downtown Newport.

The route for SantaCon isn’t announced until the night before and participants should bring either a toy of gift card for the Toys for Tots Drive. The event often goes for more than 12 hours, with participants coming and going throughout, but those who last the entire time, who can “party like Santa” will be entered into a special raffle for a one night stay at the Newport Hyatt.

For more information, please check out our website at www.santaconnewport.com.

For more information or to donate to Finnz Fundz visit their Facebook page, email them at finnzfundz@gmail.com or visit their website at, finnzfundz.

org.

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