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News

The Norrie Disease Foundation Launches

 

Exciting Research News Announced

 

The Norrie Disease Foundation's Medical Advisory Board and Wendy Horrobin celebrating the start of the NDF's exciting venture.Ethan Peacock, aged 12 – Formally launching the Norrie Disease Foundation – Ethan gave an inspirational and uplifting speech. Well done Ethan, we are all very proud of you.Dr Amina Al-Yassin sharing good news of new research starting at UCL Great Ormond Street Hospital Institute of Child HealthNadia – Nadia Al Faghih Hasan and friends get the whole room drumming and dancing.Debbie and Jake – Jake Petherick took centre stage with some fantastic drumming.Jo Sleigh – Wonderful to have Jo, Karim and Theo join in the fun today.Mike, Mikey, Jackie – It took Mike, Mikey and Jackie 8 hours to get to London – and we are so glad they made it!Wonderful to meet Laura and Mike Fullick with son, Rhys.A lovely Mum and son moment – Debbie and Jake Quinn.Guests mingling – a happy buzz everywhere!2 - 10<>

 

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.

 

 

Families from the Norrie community were joined by members from the Norrie Disease Foundation’s Medical Advisory Board which includes special clinicians and researchers from University College London and from Great Ormond Street Hospital as well as international experts in genetics and neuroscience.

 

Guests travelled from around the UK to come and enjoy 2 hours of  chatting, eating and taking part in a fantastic drumming workshop led by Nadia Al Faghih Hasan.  It was a unique opportunity for children with the condition to meet other children like themselves and for parents to hear and share experiences and to meet members of the Medical Advisory Board. One of the younger boys with Norrie said ‘the highlight of his day was meeting an 18 year old boy with Norrie and swapping favourite radio stations’.

 

The exciting news was shared that new research will start into hearing loss this October at UCL Great Ormond Street Institute of Child Health thanks to funding from Newlife. This means that there is now an opportunity in the UK to better understand the Norrie hearing loss and to work towards treatment.

 

 

The charity was set up with launch funding from Jeans for Genes Day.

 

The Norrie Disease Foundation are very grateful to the following who so generously contributed towards the launch.

 

Supported by the NIHR GOSH Biomedical Research Centre

 

Rebecca Elliott – Children’s Author and Illustrator, wonderful logos

Edmund Hall – Wonderful banner

 

Supported by:

 

Archive News

February 2017

 

Norrie Families Meet

 

Meeting at Southbank in London.'Sleeping Bunny' at Southbank.Playing dominoes at Southbank.3 - 3<>

 

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.

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©‎ Copyright Norrie Disease Foundation 2017

The Norrie Disease Foundation

PO Box 12476

Colchester

CO1 9RB

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