Inspirational Gateshead campaigner Jo Milne is continuing her mission to find a cure for the condition Usher syndrome - which meant she was born profoundly deaf and has deteriorating eyesight.
In October, Jo - who founded and runs the CURE Usher charity - was in London for the launch of what the charity is calling "the story of US", which aims to raise awareness about what Usher is. Jo was born with the condition, which meant she was profoundly deaf by the time she was 18 months old. The condition also causes eyesight to deteriorate, and Jo was registered as visually impaired at 30.
However, Jo became a viral sensation in 2014 aged 39 when a video showing how she heard sound for the first time thanks to a cochlear implant moved millions - and she has worked tirelessly to raise money for research into the condition and support those like her who live with it.
Now, she is hoping the new campaign - with the support of medical professionals such as Sunderland University's head of department for nursing and paramedics Gill Maw and Professor Mariya Moosajee from the NHS Moorfields Eye Hospital in London - will help to tackle "desperately low" awareness of what Usher is.
The charity hopes that the new campaign will help those affected by Usher who "have been left feeling forgotten, marginalised and misunderstood" and give them "a chance to break the cycle from happening over and over again [and] to give hope to families perhaps hearing of their child's diagnosis for the first time.
Jo added: "With 'The Story of US', we’ve brought together people living with the condition, advocates, and some of leading minds in healthcare and research into Usher syndrome. Together we will raise awareness and give a voice to those families who have lived with Usher syndrome for so long but feel they’ve been forgotten, marginalised and misunderstood."
The progressive nature of Usher syndrome means people with the condition are constantly grappling with changes in their vision and hearing - and there is currently no cure available. Jo said the strain on the mental and physical health of those like her with Usher was "exhausting and debilitating".
The charity also established an All-Party Parliamentary Group for Usher Syndrome in 2020. This is chaired by Nottingham MP Alex Norris, while North East MPs Sharon Hodgson (Sunderland and Washington West, Labour) and Liz Twist (Blaydon, Labour) are both vice-chairs.
Along with work to raise awareness in the wider public, Jo said the charity was delighted to have successfully pushed to get Usher Syndrome onto the curriculum for junior doctors in Sunderland along with nurses and paramedics studying at the university. She told ChronicleLive this was a "first in history".
The charity's fundraising will continue this year with a special guest performance from The Osmonds star Merrill Osmond - a supporter of the charity - at Gateshead's Hilton Hotel on December 3.
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