Thank you so much for visiting our Just Giving Page!

We are a group of 11 who have all come together for a 25km Thames Park Walk on 16th November to raise much needed funds for life changing research into Norrie disease, which our friend Wendy’s son Josh has. Norrie disease is an ultra rare condition causing mostly boys to be born blind with progressive hearing loss from childhood.

Those living with Norrie disease say the hearing loss is the hardest part because they are completely reliant on their hearing to compensate for their lack of vision. Everyday things that we take for granted are so much harder and the hearing loss is devastating, impacting massively on social opportunities, education, mobility & work. Josh says he wouldn’t want sight but would do anything to keep his hearing.

Witnessing the hurdles that living with Norrie disease brings to Josh is a key motivating fact for us all in backing this mission to save the hearing.

The Norrie Disease Foundation https://norriedisease.org.uk/about-norrie-disease/a charity set up and run by volunteers is working with a research team at University College London, Great Ormond Street Institute of Child Health to fund research into treating and preventing the hearing loss. This is an especially exciting time as fantastic progress has been made and there is now a much clearer understanding on how they can make this treatment a reality.

Of course bringing this treatment to Norrie patients is a long and expensive journey but there is now hope for the Norrie community for a much brighter future if they can keep their hearing. It's hard to put into words what this would mean.

Thank you so much for taking the time to read this. Any help you can give is greatly appreciated.

The Thames Walk Team x

Wendy, Mel, Rachel, Kate, Vikki, Annie,Jane, Sarah W, Alison, Narges, Katty

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.