Our daughter, Kennedy, was diagnosed with Kabuki Syndrome in December 2013 when she was 3 months old. Kabuki Syndrome is a relatively "new" syndrome that affects thousands of children. Much is still unknown about Kabuki Syndrome and our family, along with many other families who have children who have been diagnosed with the syndrome, are still trying to learn about the syndrome itself and how it affects our children.
Dr. Hans Bjornsson, a researcher who is also the director of an Epigenetic and Chromatin Clinic at Johns Hopkins, specializes in the research of Kabuki Syndrome and is looking for treatments and, hopefully, a possible cure. Dr. Bjornsson has agreed to be the guest speaker at our first annual Texas Kabuki Gathering, which is being held on October 25, 2014, in Temple, Texas.
Dr. Bjornsson's laboratory "is interested in developing epigenetic treatment strategies to minimize disease mortality and morbidity caused by genetic mutations." The research he is doing for our Kabuki children is incredible. Here is an example of his work:
The purpose of this fundraiser is to raise money to help offset Dr. Bjornsson's travel expenses to our Texas Kabuki Gathering in October. Although we greatly appreciate any amount you might be able to contribute to this cause, we would also appreciate prayers for our Kabuki children and their families, as well as the researchers who are working fervently to learn more about Kabuki Syndrome so that they might be better able to help our Kabuki children. Your donation will not only benefit our sweet Kennedy, it will benefit other children and their families, too.
Thank you in advance for your support and your prayers!!!!
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