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Lake Zurich friends ‘rock’ for rare disease research
Kerry Hughes (left) and Lori Butler founded the Two Hearts Rock to share good music and raise money for research of rare diseases. On Friday in Hawthorn Woods, they did both. | Michelle LaVigne~Sun-Times Media
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Updated: March 2, 2013 6:20AM
HAWTHORN WOODS — More than 100 people shared their affinity for live music and a good cause Friday at the Hawthorn Woods Country Club.
The event was made possible by a pair of longtime Lake Zurich neighbors, Lori Butler and Kerry Hughes, who launched Two Hearts Rock soon after forming a friendship over music. The Lake Zurich-based charitable organization raises money for research of rare diseases.
“We were neighbors and we learned through Facebook that we had a love of music,” said Hughes, pointing out that Bruce Springsteen tops their lists of favorites.
Hughes was working as a teacher in Barrington when she learned that one of her fellow teachers had a daughter, Bridget, who was battling Batten’s disease, a rare neurodegenerative disorder.
“Lori and I thought we needed to honor Bridget’s birthday,” Hughes explained.
The pair responded by helping coordinate a birthday party in 2010 for Bridget at Glenview’s Kohl’s Children’s Museum, where they brought in some acoustic musicians to perform.
“We thought the music created an audience,” Hughes said. “We know that music creates unity and unity creates hope.”
Since Bridget responds primarily to music, Butler said the young girl became the inspiration for Two Hearts Rock.
“Kerry and I are two hearts getting together for this cause,” said Butler, explaining that a rare disease is classified as an illness that affects 2,000 people or less worldwide.
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.”
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.
Dollar Denim Days will be taking place locally in February and March. Schools in both Lake Zurich and Barrington will participate Feb. 28 in conjunction with World Rare Disease Day.
Friday’s benefit, Hughes said, was held specifically to fund research for Alternating Hemiplegia of Childhood.
“The reason we’re highlighting that disease is there is a student in Lake Zurich who was diagnosed with this condition,” said Hughes.
Butler said all the proceeds from Two Hearts Rock events goes to research for rare diseases.
“It costs millions of dollars to bring any form of treatment to the market,” said Butler. “Music is a unifier and brings people together, and we’re connecting people to the cause through music.”
Friday’s performances featured Out of Storage, a local band that plays 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.”
Two Hearts Rock also has scheduled a benefit for Bridget at McGonigal’s Pub in Barrington on Saturday (Feb. 2), featuring the local bands Tanglewood Tales and Between the Lines.
