I am the CEO of Usher Kids UK, a charity I founded to empower families diagnosed with Usher syndrome Ð a cause of combined hearing loss and progressive vision loss. A diagnosis of a rare progressive deafblind condition, coupled with a lack of specialist support, can generate feelings of isolation and fear which impact all aspects of family life and can negatively impact outcomes for the child.

My Fellowship focuses on models of support for families after diagnosis, and at other key milestones, which equip them with information, connections and confidence so that they can make informed choices to access the tools, skills and strategies which enable their child and family to thrive.

I hope to define a model which connects families with expert support and information from multi-disciplinary teams, embedded within a professional training and delivery system to upskill existing and future professionals. This model will facilitate meaningful connections with peers and mentors in the deafblind community, so that families can build networks of support to confidently navigate the path ahead and, above all, transform the experiences and outcomes of the next generation.