Saturday 13th May saw the culmination of a year’s hard work and preparation as the Norrie Disease Foundation launched at University College London, Great Ormond Street, Institute of Child Health.
Around 70 guests gathered to celebrate the start of what promises to be an exciting journey for the Norrie Disease Foundation – a strengthening of the Norrie network and the promotion of vital new research into the condition.
The launch was opened by Professor Maria Bitner-Glindzicz, a clinical and molecular geneticist, with a special interest in deafness, from UCL Great Ormond Street Institute of Child Health. The Norrie community’s Ethan Peacock, aged 12, took to the stage to formally launch the foundation and shared a few words about what it means to him to have the Norrie Disease Foundation up and running. “The Norrie Disease Foundation gives me the chance to get to know others who share in this condition. I am looking forward to connecting with some of the older Norrie community and being able to ask the questions. And in turn pass on my experience to the younger members of the community”. You can listen to all of Ethan’s speech by clicking on this link and there is also a text link to his speech.