Clinton Moore, President of the Cystinosis Research Network and father to Chandler, a teenager diagnosed with the rare disease of cystinosis when he was 10 months old, talks of the family’s experience, the impact to their daily lives and what it’s like to parent a child with a rare disease. He discusses the new documentary “Walk In My Shoes” and the inspiration for the project.
Clinton Moore resides in Georgetown DE, with his wife (Annie) and his son (Chandler). He has been a self-employed masonry contractor for the past 20 years. He is the vice president of the Lower Delaware Chapter of the National Wild Turkey Federation as well as the president of the Cystinosis Research Network. His son was diagnosed with cystinosis when he was 10 months old. Clinton has been heavily involved in advocacy and fundraising efforts and some of these efforts include the construction of a 12 feet tall awareness ribbon that quickly became a worldwide symbol recognized by the cystinosis community, organizing a 57 mile walk, and most recently a full-length documentary.