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RARE DISEASE DAY LIFHT UP THE UNIVERSITY

February 28

My daughter, Kobi Isabella Painting, petitioned Southeastern Louisiana University to light up the University Center with the RARE colors Sunday, February 27, and Monday, February 28th. The university did it! Her two older sisters have CTX, and she wants to bring awareness about the disease. She’s also competing in the Miss Louisiana contest in June and will shed more light on it there as well. She’s advocating for infant testing!!!

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Date:
February 28
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