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2112. Jo Milne

Jo Milne, from Gateshead, founded ‘CUREUsher’, a charity raising awareness of the rare condition Usher syndrome which causes sight and hearing loss.

Jo was diagnosed as profoundly deaf at 16 months but was not registered as blind until she was 29 and found to have Usher Syndrome. Jo founded ‘CUREUsher’ in 2018 and has since been determined to improve education on Usher syndrome with GPs and healthcare professionals, raise awareness of the red and white striped canes used by people with both sight and hearing loss, and fund research into finding a cure. 

In 2020, Jo helped set up the All-Party Parliamentary Group for Usher syndrome and has also successfully campaigned for an official awareness day, to help bring attention to Usher syndrome, which takes place in the UK in March. In 2022, Jo launched a new campaign called ‘The Story of US’, as a positive awareness and fundraising campaign to support those that live with or who have been affected by Usher syndrome.  

(Jo is pictured with the Minister for Disabled People, Health and Work, Tom Pursglove MP. Picture by Mark Flynn Photography)

In a personal letter to Jo, Prime Minister Rishi Sunak said:

“Through your charity, ‘CureUsher’ you are tackling misunderstandings surrounding deafblindness, and funding vital research into finding a cure.

“You know from your own experience just how important it is to improve the diagnosis and understanding of Usher syndrome. So it is great to hear that you are working so closely with GPs and healthcare professionals – and I was pleased to learn about the support you have received from your local Northumbria Healthcare NHS Foundation Trust.”

Minister for Disabled People, Health and Work, Tom Pursglove MP, said:

“It is only right that the brilliant, patient-led work done by Jo and ‘CUREUsher’ has been recognised with a ‘Points of Light’ award from the Prime Minister.

“The awards are intended to spotlight those making a positive change in their community, and having met Jo and others involved with ‘CUREUsher’ I know it is very well-deserved. Their work to inform and educate on Usher Syndrome and deafblindness, and their commitment to searching for a cure, is making a real difference in people’s lives. It is my belief that together, we can create a society that works for everyone, where all can participate and be fully included.”

Jo said:

“I am so very grateful to receive this recognition, to read the words Prime Minister and Usher syndrome in the same sentence is an achievement in itself and so important for those that live with the condition.  There is so much more to do, and with this recognition of the work I have started I hope we can forge ahead and affect meaningful change in the future for those that live with Usher syndrome.”

See more about ‘Cure Usher

The daily Points of Light award recognises outstanding individual volunteers - people who are making a change in their community.

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