Run4Hope benefiting Hope4Harper’s Seizure Research
Hope4Harper is a non profit organization created in honor of Harper Elle Howard born April 12, 2010 with a rare life-threatening genetic disorder known as CDKL5.
September 8, 2012 –
5K family friendly fun run will be held on Saturday, September 8th beginning at 8:00 a.m., located at Andy Brown Park West at 401 N. Denton Tap Rd., Coppell, TX 75019. Early registration is $25 through September 3, 2012 and only $10 for kids, ages 12 and under. Registration day of is possible and a Virtual Run option is also available at our website www.hope4harper.com/run-4-hope.
Harper, born with CDKL5 disorder, currently suffers anywhere from 3 to 27 seizures a day that last from 30 seconds to 15 minutes in length. The seizures have severly delayed Harper’s physical abilities. Harper is 2 years old with the physical ability of a 4 month old. CDKL5 is a rare life-threatening genetic disorder, which results in early onset of intense seizures, autistic tendencies, visual impairment, and possible scoliosis, along with severely delayed mental and physical developmental growth. There are currently fewer than 500 cases worldwide. Most affected are without the ability to communicate or care for themselves.
Hope4Harper is currently working to fund a seizure research project with Renowned Epileptologist, and 2012 President of the American Epilepsy Society, Dr. Frances Jensen and her team in an effort to stop the dabilitating seizure in children affected with CDKL5. The project is centered on finding the reason why CDKL5 individuals suffering from Epilepsy do not experience seizures when they are ill. The outcome of this research project has the potential to help more than just Harper and children with CDKL5 but all those who suffer with seizures regardless of the cause.
The Seizure Research Project currently being funded by Hope4Harper started January 2012 and the remaining 81K to complete the project is due by the end of this December. For more information on Harper, her Cause and the Seizure Research please visit http://www.hope4harper.com
