Today we’re sharing the story of Cure Usher founder Jo Milne as part of our Wild Fund. Jo is an activist and social change maker making waves in the North East and Nationally.

Hi Jo, please can you share more about the work that you are doing
I founded Cure Usher syndrome pre-pandemic, my life’s work in the nonprofit sector, my life living with Usher syndrome and then recently giving birth, further confirmed the need to create a charity specifically to raise first – awareness of Usher syndrome and secondly – much needed funds for research into a cure.

We are a patient-led organisation with a team of dedicated passionate advocates for those that live with the condition, people, patients, parents and partners – all working to address the unmet needs of the community.

Why is it important and what do you hope to achieve?
Awareness of Usher syndrome is chronically low. With over 11,000 people in the UK alone living with the condition – it’s a similar number as those living with Cystic Fibrosis – but the public and professional awareness is so very poor.

Self-advocacy at every interaction is exhausting – and it doesn’t have to be like this – we are working to initiate a national conversation about dual sensory loss – to achieve a nationwide awareness, across all platforms, to create policy change and forge partnerships at every tier of society and ultimately, help those who are in a position to help Us find a cure.

What do you wish people knew about Cure Usher Syndrome?
I would like people to have some understanding of how exhausting it is just navigating a world that isn’t designed for us. Living with a sensory loss can – strangely, be quite empowering – I was born with a profound hearing loss and I have always been proud of my deaf identity. To then accept and adapt to a life with a progressive sight loss too is particularly challenging, my peripheral vision has been gradually curtailed so that I now have just 5% central vision left. This precious small window still allows me to see the world, but I have to scan and prepare so much more than you might think.

Usher syndrome is a progressive condition – for me, Cure Usher has been established to challenge perceptions, to educate and to seek justice and respect for the people that live with the condition, to advocate for the humanity within it and to bring the people to the centre of the decisions, the research and to ensure they are involved with it all – not just to have it done at them or for them.

That’s why it’s so important to tell our stories by advocating and giving others an insight into our lives, we are unique – but just as everybody is slowly awakening up to as well, everyone else is too – we are all human, we are not defined by Usher syndrome – just connected by it.

What book, video or podcast do you recommend to push awareness around Cure Usher Syndrome?
I enclose a link of the Touchable Memory. This is a beautiful insight into our journey – from discovery and diagnosis – to adaptation and advocacy – proof that with passion and empowerment an authentic, shared experience can have an impact beyond words, beyond pictures – and truly drive to the core of the essence of what it is to be human –

Thanks so much, Jo for sharing your inspiring story. You can find out more about Jo and Cure Usher syndrome here.