Employees of Memorial Health System (MHS) recently wore blue jeans at work for a “Jeans Day” fundraiser. Employees who made a donation of at least $5 were allowed to wear blue jeans on the last Friday of April. A total donation of $275 was presented to the UBA5 Foundation. Madelyn Krauter, of Hiawatha, was diagnosed with UBA5, and her and her family were at Memorial Hospital in Abilene recently to receive the donation. Madelyn’s mother, Kim, is an Abilene native. UBA5 is a very rare mutation that causes extreme developmental delays and is a degenerative disorder that affects all individuals differently. As of now, there are 22 known individuals that have the mutation in the United States. The foundation was set up to raise money, primarily for research, in hope for a cure. Knowing, and understanding, more about the gene mutation will allow those affected by the disorder to have more answers and a better understanding of the disorder. The foundation is also raising money to support others going through the process of genetic sequencing to get answers. Genetic testing is very expensive, and many times not covered under insurance, and this is the only way to diagnose the UBA5 gene mutation. If you would like to donate to the UBA5 Foundation, please go to www.gofundme.com and search UBA5 Medical Research organized by Amber Smith. The Jeans Day was organized by the MHS Employer of Choice (EOC) committee. Pictured from left are: Haley Jones, EOC committee member; along with the Krauter family: Kim, Madelyn, Brent, Alizabeth, and Madelyn’s grandmother, Debbie Lytle.
