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posted: 2/27/2014 1:01 AM

Northwest suburban parents take aim at two rare childhood diseases

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  • Video: Music Used to Fight Disease

  • Karl Vincent Roth, a graduate of the Barrington schools, returned for a live music event with students at North Barrington School.

       Karl Vincent Roth, a graduate of the Barrington schools, returned for a live music event with students at North Barrington School.
    JOE LEWNARD | Staff Photographer

  • David and Sara Kennicott, with their daughter, Bridget, watch Karl Vincent Roth's show.

       David and Sara Kennicott, with their daughter, Bridget, watch Karl Vincent Roth's show.
    JOE LEWNARD | Staff Photographer

  • Karl Vincent Roth joined the fight against Batten disease by entertaining and enlightening students at North Barrington School.

       Karl Vincent Roth joined the fight against Batten disease by entertaining and enlightening students at North Barrington School.
    JOE LEWNARD | Staff Photographer

 
Daily Herald report

Two groups organized events in the Northwest suburbs last week to fight little-known Neurofigomatosis and Batten disease.

Uncork a Cure, a wine tasting event benefiting Children's Tumor Foundation, a Neurofigomatosis organization, raised thousands of dollars and awareness Friday night at the Metropolis Performing Arts Centre in Arlington Heights.

It was organized by moms, led by Kristin Meek and Jennifer Licato, both parents of small children with Neurofigomatosis.

Meek and Licato, introduced by friends, met about 18 months ago and quickly became friends, bonding over their difficult journeys, their worry over their children, and their fight to end NF. Last fall, they turned to other moms in their community for help in raising awareness and funds for NF research.

About one in 3,000 children are born with NF, with half the cases inherited and half caused by a spontaneous genetic mutation. NF is different in every person, but can lead to disfigurement; blindness; skeletal abnormalities; dermal, brain, and spinal tumors; loss of limbs; malignancies; and learning disabilities. There is no cure and there are no treatments.

More information on Neurofibromatosis is at www.CTF.org.

Harmony 4 Hope

Earlier on Friday in Barrington, Harmony 4 Hope founder Kerry Morgan Hughes organized a musical performance at North Barrington School, kicking off a campaign for children battling rare diseases.

Hughes, of Lake Zurich, was inspired to start her charity by her friendship with Sara Kennicott, developed when they both taught at Grove Avenue School.

Kennicott, who now teaches at North Barrington School, has a 9-year-old daughter, Bridget, suffering from Batten disease. It is a fatal, inherited disorder of the nervous system that typically begins in childhood.

"From the moment of Bridget's diagnosis in 2009, I've felt compelled to contribute to this cause in some way," Hughes said. "Music has always moved my soul and so I looked for a way to unite my passion for music with a greater purpose to help Bridget and kids like her."

Sara and her husband, David, started the Hope4Bridget Fund at Cures Within Reach (www.cureswithinreach.org) to find a cure for Batten disease. The two not-for-profit organizations worked together on the live music event featuring Karl Vincent Roth, an alumnus of Barrington Unit District 220 and a former fourth-grade student of Hughes.

The event kicked off an effort by students at North Barrington School to collect iTunes gift cards and used iPods, Nanos and shuffles, which will be distributed to children battling rare diseases.

"It was very inspirational," Hughes said. "We got kids jazzed up about it."

Batten is one of 7,000 rare diseases, defined as a disease affecting fewer than 200,000 people. Rare Disease Day is Friday, Feb. 28.

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