A rare, life-threatening, non hereditary genetic disorder that carries a multitude of symptoms such as, difficult to control seizures, metabolic, cardiological, visual, and skeletal muscular issues, along with physical and metal developmental delays.
HOPE
Hope4Harper was started in honor of Harper Elle Howard, in an effort to alleviate the symptoms associated with the disorder and provide a better quality of life. Harper found CBD hemp oil and lived a fantastic final 28 months but sadly that alone could not save her from this devastating disorder.
GROW
On January 8, 2016 Harper went to Heaven and her body was left to science. However, without funding science can do nothing with the generous gift Harper left behind. The Jensen Lab has identified a new approach for treating CDKL5 disorder that has crossed into the possibility of treatment of other epilepsy and neurodegenerative disorders in particular, Alzheimer's. The work will be published February 2019.
Harper's Heroes
Annual fundraiser for cdkl5 seizure research and awareness. https://www.hope4harper.com/harpersheroes/
