LAWRENCE, Kan. – Kansas Baseball will be holding its third annual Rare Disease Game on Saturday, May 2. The Jayhawks will play Arizona at 2 p.m. CT. KU will be wearing special shirts during batting practice that features the 'Kansas' wordmark in zebra print to help raise awareness for rare diseases.
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Saturday's Rare Disease Game was initially conceptualized with Kansas Assistant Coach/Pitching Coach
Brandon Scott's family in mind. His daughter was diagnosed in 2018 with a rare disease called CSNK2B Neurodevelopmental Syndrome.
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"Denise and I are so grateful for Kansas and Coach Fitzgerald for allowing us to have this game," Scott said. "It's really important to our family that we raise awareness for CSNK2B and the prevalence of rare diseases.
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Scott continued, "Our daughter is incredible. It's also a life changing diagnosis. When we share our story it normalizes how common rare diseases really are and how many people are living a similar experience. That connection and feeling of togetherness has really been helpful to us."
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There are currently around 200 known cases of CSNK2B Neurodevelopmental Syndrome diagnosed worldwide. It is considered to be an ultra-rare disease and was only discovered in 2017. May 1-3 is 'Together for CSNK2B Awareness' weekend and aligns with Saturday's game. For more information on CSNK2B, people are encouraged to click
here.
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In addition to the team wearing specially designed shirts, the decals on the bases will have the Kansas wordmark in zebra print.
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The zebra design for rare diseases stems from the phrase, "When you hear hoofbeats, think horses, not zebras," which teaches doctors to look for common diseases (horses) first. However, sometimes the diagnosis is actually a zebra – rare, misunderstood, and often overlooked.
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A rare disease is considered a disease or condition that affects less than 200,000 people in the United States. Scientists have identified more than 10,000 distinct rare conditions. Between 300 and 400 million people live with a rare disease worldwide. In the United States alone, about 1-in-10 people are living with a rare condition.
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No. 11 Kansas (34-11, 17-4 Big 12) will host Arizona in a three-game series at Hoglund Ballpark this weekend.
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