Illinois Golfers Bear the Heat for Ichthyosis
Foundation members Kathy and Matt Kouba joined forces with their friends, family, and community in Plainfield, Illinois, to host a golf outing at High Point Golf Club, Essex, IL, on July 15, 2006. Sixty-four golfers enjoyed the play on all 18 holes in spite of the ninety-degree weather. Kathy and Matt's two children, Alicia and Ben, are affected with CIE. Their intention in hosting this event was not just to raise money for the Foundation but also to educate their community about ichthyosis. The Koubas have had many of the experiences that are common to parents of children with ichthyosis; the lack of knowledge in area doctors, the danger of overheating in warm weather, and the stares and comments from people in public places. Two local newspapers interviewed the Koubas about the golf outing and the family's experience with ichthyosis. As a result, their community is more informed, local businesses were motivated to generously support the golf outing, and the family has connected to other people in their area who are affected by ichthyosis. The hard work of the Koubas and their friends, and the generosity of their community raised approximately $5,000 for the Foundation.


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