Chloe is the founder and CEO of Usher Kids UK, a charity which exists to empower children and young people aged 0-25yrs living with Usher syndrome and their families. Chloe is also the parent of a child with Usher syndrome, and went on a steep learning curve following their diagnosis in 2011, during which she identified gaps in support which addressed the unique features of Usher syndrome - progressive dual sensory loss. She feels passionately that families living with Usher syndrome can thrive with access to tailored information, support and connections, and now volunteers full-time for Usher Kids UK to make this vision a reality.