Young CT girl raises awareness about ALS - WFSB 3 Connecticut

Young CT girl raises awareness about ALS

ALS carnival held in honor of Glastonbury 8th grader's father on Monday (WFSB Photo) ALS carnival held in honor of Glastonbury 8th grader's father on Monday (WFSB Photo)

The ALS ice bucket challenge has swept the nation and gone viral with celebrities and friends doing what they can to raise awareness for the debilitating disease.

While the trend has stormed the nation, locally a young girl started her own mission to fight ALS in honor of her dad.

It may have looked like your average block party in Glastonbury on Monday afternoon, but the music, bounce houses and food at this gathering were all to raise awareness for ALS. It's been going on for four years and the neighborhood kids know all about it. But now, they want the state to know.

"I started middle school this year, so I got more friends and I invited them all," Shannon Kiniry, who plans Annual ALS Carnival, said.

Kiniry is about to enter the eighth grade and has been putting on the event in honor of her father. In 1999 her dad, Chris, was diagnosed with ALS, which is also known as Lou Gehrig's disease. Four years ago, when Kiniry was in the fourth grade, she decided she wanted to raise awareness. 

"When you're going in to fourth grade, you don't really give back much, so I thought I would do a fundraiser," Shannon Kiniry said.

That first carnival raised $800 and the next year it grew to $2,000. Last year, the event raised $3,700 and now this year, with the help of the ice bucket challenge, the sky's the limit.

"I just told more people and everyone loves my dad," Shannon Kiniry said. "They love to help him and I do too."

From a small neighborhood gathering, the carnival has added another balloon house, a handful of games, a dunk tank and now, the obligatory ice bucket challenge.

Chris Kiniry is now in a wheelchair and watches the festivities.

"There's such joy in my heart, it's something you really can't describe," Chris Kiniry said.

There's still no cure for ALS, so Chris Kiniry said the pride he feels is twofold. His eighth grade daughter is showing incredible maturity in the face of a dire situation while the struggle he and 30,000 others throughout the country dealing with ALS are getting some much needed attention.

"Really, all you're doing is wasting away," Chris Kiniry said. "But through what Shannon has done, it gives everyone hope."

The final amount raised is still being calculated, but projections are estimating more than $5,000 will be raised for the Connecticut Chapter of ALS Association.

To donate to the Connecticut Chapter of ALS Association, click here.

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