Barrington 8-Year-Old Inspires Rare Disease Research

February 21, 2013

BARRINGTON — More than 100 people shared their affinity for live music and a good cause Saturday at McGonigal’s Pub in Barrington.

The event, which raised more than $6,000, was held in honor of Barrington 8-year-old Bridget Kennicott, who was diagnosed in 2009 with Batten’s Disease, a rare degenerative brain disorder.

Kennicott is the inspiration behind the local charitable organization, Two Hearts Rock, which was launched in 2010 by a pair of Lake Zurich neighbors, Lori Butler and Kerry Hughes. They formed a friendship over music and turned their passion into a way to raise money for research of rare diseases.

Sara Kennicott, Bridget’s mother, first met Hughes in 1994 when the two were working together as District 220 teachers.

“Kerry and I are longtime friends, and she started this in honor of Bridget,” Kennicott said.

The Two Hearts Rock idea came together in 2010, shortly before Bridget’s sixth birthday.

The first event had Butler and Hughes helping coordinate Bridget’s party at the Kohl’s Children’s Museum, where acoustic musicians were brought in for entertainment.

“We thought the music created an audience,” Hughes said. “We know that music creates unity and unity creates hope.”

From there, more benefit concerts were planned, all to raise money for rare disease research.

“It kind of just snowballed from there,” Kennicott said. “Their interests just kind of grew in realizing that there are so many rare diseases.”

The musical aspect proved even more fitting because Bridget has shown to primarily respond to music. She quickly became the inspiration behind Two Hearts Rock.

“Kerry and I are two hearts getting together for this cause,” Butler said.

The cause is rare disease research, which Butler explained is an illness that affects 200,000 Americans or less. Butler said there are an estimated 7,000 rare diseases affecting about 350 million people, many of whom are children.

“Rare disease isn’t that rare,” Butler said. “It’s actually quite common.”

To make a greater impact, Hughes said Two Hearts Rock soon became connected with the Global Genes Project, the world’s largest advocacy organization for rare disease research. Hughes and Butler also help raise money for research through Dollar Denim Days, in which students go to school wearing denim ribbons in support of rare disease research.

“It’s kids giving back to kids in the community,” said Hughes.

In conjunction with World Rare Disease Day on Feb. 28, local Dollar Denim Days will take place in February and March in schools across the Lake Zurich and Barrington areas.

“We’re so grateful that we have these advocates for us,” Kennicott said. “We’re very touched that they’re making us their passion.”

Butler said she’s proud that all proceeds from Two Hearts Rock events fund research for rare diseases.

“It costs millions of dollars to bring any form of treatment to the market,” Butler said. “Music is a unifier and brings people together, and we’re connecting people to the cause through music.”

Saturday’s benefit at McGonigal’s featured Between the Lines, a Barrington band.

“It was a fabulous success. It was very well attended,” Kennicott reported. “Even though there was a serious component to the night, everyone had a really good time.”

On Jan. 25, Two Hearts Rock hosted an event at the Hawthorn Woods Country Club. Local band Out of Storage played rock hits from the 1960s to the present. Hughes said the music went until almost midnight.

“Everyone had a good time and left with more awareness of rare disease,” she said.

Two Hearts Rock does not host golf outings or hold auctions to raise money. Hughes said they are committed to keeping the simplicity of bringing people together through music.

“It’s unique,” she said. “We just want people to come out, listen to music and support a good cause.”

Learn more at The Barrington Sun Times. 

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