This is a fundraiser to fund clinical trial for CDKL5 hosted by Hope4Harper-CDKL5. Hope4Harper is a non-profit started by Harper’s parents, who also had the CDKL5 disorder. However, Harper passed away before she turned 6 years old due to this disorder. Her parents continued the nonprofit and to find a cure for CDKL5. CDKL5 makes a protein in the body, and the absence of which causes many problems like seizures within the first few months of life, that are not controlled by medicines, the children can’t talk or walk, and are dependent on their parents for everything. Similar to diabetes, where a person’s body cannot make insulin, and needs insulin injections, these children need CDKL5 protein. Since this is a rare genetic disorder and not as many people are impacted, unlike diabetes or cancer, there is no motivation for pharma companies to develop treatment. So the parents of these children have worked to develop the synthetic form of the protein to deliver to the children, and are fundraising to continue the effort to ensure this gets to clinical trial.
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