Julian was born in 2016, and we quickly realized he wasn't meeting milestones. We went through all the tests. All the diagnoses. Was it CP? Ataxia? Apraxia? Sensory processing disorder? Autism? Finally, in 2020, we received answers via a whole exome sequencing that Julian has a rare genetic variant of the KDM5C gene. This is the cause of his symptoms - including motor delays, intellectual disability, autism, and more.
In 2022, I joined forces with three KDM5C moms to create the KARES Foundation, a nonprofit dedicated to improving the lives of individuals living with KDM5C-related disorders through advocacy, research, education, and support. We made huge strides in connecting our organization with partners in the research and rare disease communities. Last year, this event raised $77,000 with 416 runners. We need your support to make an even bigger difference for children like Julian!
The KARES 5K Your Way can be completed however and wherever you like! However, if you are in the Charlotte area, we will post details of our small event at a later time.
