BENEFITING: Charities Aid Foundation America
Our Evie was diagnosed with Kleefstra Syndrome at 1 month of age. Kleefstra Syndrome is a chromosomal disorder where a missing or mutated portion of the 9th chromosome and the protein coding gene EHMT1 cause profound developmental delay, lack of speech development, low muscle tone, and a host of other medical anomalies. We have lived her life so far having to come to terms with the fact that Evie will always be significantly developmentally delayed physically and mentally. That she will ALWAYS be different than her peers. That is until this last year, when we learned that there is amazing research being done by some of the world's most brilliant minds to find a drug treatment that could significantly improve Evie's cognitive process. This research is being spearheaded by GeneSpark, a foundation formed by parents just like us. Parents that have a child diagnosed with Kleefstra Syndrome that have HOPE for a brighter future. There is HOPE that someday, Evie may be able to function at a higher level. There is HOPE for Evie that she may not have to go through severe regressive stages. There is HOPE for our little girl and for others like her. This is where YOU come in...we NEED your help. Together with other families we have committed to help raise funding for this very ground-breaking drug research. September 17, Kleefstra Syndrome Day, we will be hosting a walk in Bellevue, Nebraska to raise awareness for Kleefstra Syndrome. During the walk we will be posting pictures and videos to social media to promote our event. While you are welcome to join us, know that you don't even have to leave your couch to lend us a hand! Please join us the week of September 17-25 on our Virtual Walk and Roll to help raise funds to continue the research that may one day turn our HOPE into REALITY. Click on the link for Evie's CrowdRise page to make your tax deductible donation. All proceeds will go toward drug research. To learn more about the research and about GeneSpark's mission please visit genespark.org.