CureUsher, registered charity number 1181293.
Where are you located
Number of employees
As a non-profit charity, we currently have 4 trustees on the board of directors and a scientific advisory panel of 4, all 8 of who dedicate their time, passion and commitment on a voluntary basis in order to help CUREUsher fulfil its mission.
Give us a brief overview of your business
CureUsher, a charity funding scientific research was founded in 2018 by Gateshead born Jo Milne, who is profoundly deaf and losing her sight due to a rare genetic condition, Usher syndrome, yet the leading cause of deafblindnes.
Jo became a global prominence in 2014, when a YouTube video capturing an emotional moment when her cochlear implants were switched on subsequently became one of the world's most watched internet videos. This catapulted Jo into the public eye and has since used her global platform to raise awareness through media appearances and inspirational talks. Jo is a published author in the UK and Japan and also starred in the BBC Gift of Hearing, winning a Royal Television Award for factual documentary which features Jo providing hearing aids to deaf and deafblind children in remote villages throughout Bangladesh.
The charity recognises there is a greater need to help people at the grassroots; and we hope to fulfil our promise to find a much needed cure particularly for the newly diagnosed children and their families before their sight deteriorates further and to make Usher syndrome a disease of the past.
What has been your top tip for keeping business going during Covid-19?
COVID-19 has changed society in a number of ways, and much more dramatically and fundamentally than we ever imagined. Public fundraising, our main source of income has been dramatically reduced, there is a concern that researchers will no longer be able to continue their vital work as their focus is directed elsewhere.
As we try to go forward, building a new way of life by making fair and inclusive decisions is key as we can work from a fresh clean slate, learn from experiences and put this into practice. We have a rare opportunity to plan a better future by better attitudes and a better built environment educating decision makers and influencers.
Saying this, there is a greater demand for support and a big increase for advocacy and for us, ensuring no-one is feeling isolated in the Usher syndrome community particularly as many worry about their mental health and dealing with new coping strategies to adapt with the 'new normal', which is extremely challenging in itself due to restrictions in both sight and hearing.
Tell us why you are a Chamber member?
Jo says, "I want to champion the North East to the wider world and follow in the footsteps of many renowned homegrown charities in our region.
I strongly believe that by raising our profile, support may be gained by raising awareness by bringing knowledge and participation together to achieve our goal to create a better understanding of Usher syndrome, how the disease works, and potentially lead to a cure. And most importantly of all, to eliminate our fight every day to be simply seen, heard and recognised.