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Two Hearts Rock to Bring Hope in Fight Against Rare Disease

Barrington child battling rare disease inspires unique non-profit that unites people through music.

 

Two Lake Zurich moms have combined their shared love of music with their desire to help children fighting rare diseases. 

Lori Butler and Kerry Hughes of Two Hearts Rock started a non-profit that raises awareness of rare diseases, supports the families affected by rare disease and raises funds for research.

“Two Hearts Rock is a platform for raising hope and awareness for rare disease using live music,” Butler said. 

“The name comes from a Bruce Springsteen song; Two hearts are better than one and two hearts will get the job done,’ Hughes said.

It all started with Facebook and Bridget.

Butler and Hughes are neighbors who became Facebook friends and realized their shared love of music, particularly Bruce Springsteen. 

“Lori and I love music. It brings people together naturally. You can go to a concert, start a conversation and stay connected. Music is a unifier,” Hughes said.

The woman have a friend, Sara Kennicott of Barrington, whose daughter Bridget has Batten disease, a degenerative brain disorder.

“It took awhile to get a diagnosis. As with all rare disease, it’s a journey into the unknown and takes a team of doctors to diagnose,” said Butler, who previously worked in pharmaceutical sales. 

“You’re happy on one note, that there is a diagnosis, but then you find out there is no protocol and your child is going to die,” said Hughes, a former elementary school teacher. 

Two years ago , they decided to throw a birthday party for Bridget, who was turning six,  at Kohl Children’s Museum.

“She has a life expectancy of 12 and we wanted to honor her and love her,” Butler said.

They invited a speaker from Libertyville, Heather Earley, of the Children’s R.A.R.E Disease Network, which has since become the Global Genes Project. 

“We were on a journey to raise money and find a cure for Batten disease. We found out there are 7,000 rare diseases that affect 350 million people across the globe,” Hughes said.

Rare and genetic disease affects 1 in 10 Americans, according to the Global Genes Project, one of the leading rare and genetic disease patient advocacy organizations in the world.  

Building Hope with Music 

Two Hearts Rock is now a strategic partner with the Global Genes Project.

“Their slogan is that unity creates hope; we say music creates unity,” Hughes said.

 Two Hearts Rock has been working on making denim ribbons for World Rare Disease Day, Feb. 28 with the the help of Spencer Loomis students. Last year, CorDynamics, a contract research organization based in Chicago, matched donations made by community members for World Rare Disease Day. 

Two Hearts Rock’s first big event was  held in Wrigleyville, last year. They brought in Jesse Malin and the St. Mark’s Social to a venue for “Peace, Love, Rock and Hope for Bridget.” The event was sold out and they raised $6,000 for Bridget. 

“Most of the people were there for the music or the venue, but we had a captive audience for rare disease,” Hughes said.

They have two upcoming events: 

Jan. 25, in honor of a Lake Zurich child afflicted with AHC, a rare neurological disorder.

 The event will feature Out of Storage playing rock hits from the ‘60s through today. 

On Feb. 2, Two Hearts Rock will hold a Rock the Reel benefit for Bridget Kennicott at McGonigals in Barrington. Live music will be provided by Barrington musicians, Tanglewood Tales and "between the lines."  

Both events will include a screening of  “Here. Us. Now.” a documentary film commissioned by the Ewing Marion Kauffman Foundation. The film chronicles one family’s fight to bring medical innovation home.

“The documentary is about parents of twins dying of a rare genetic disease and pioneering their own therapy,” Butler said. “It’s a journey into the dark up against a lot of doors and hopefully, you find windows. Hope is the light that shines through the window. Music and hope can make a difference," she said.

Find Two Hearts Rock on Facebook.

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