The Norrie Disease Foundation‘s Medical Advisory Board and Wendy Horrobin

The Norrie Disease Foundation Launches

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.

Norrie families meeting at Southbank in London.

Norrie Families Meet

On Sunday 26th, February, 2017, families from the Norrie community travelled from Liverpool, Cardiff, Essex and London to meet at the Southbank in London.

This was the second time that Norrie families had got together in the UK – a fantastic opportunity for families who have something very special in common to meet.

Our Norrie boys ranged in age from 2 years to 11 years. Their siblings also came along to join in the fun. For some, it was the first time they had met other Norrie families.

A few of the older boys tackled an enormous climbing frame before everyone headed off to the Festival Hall for some lunch, after which there were games of dominoes and cards.

A really lovely day, with some sleepy bunnies at the end! We are already looking forward to our next Norrie family get together.