Awareness and support for people living with the condition Usher syndrome are “desperately low” says charity founder, Jo Milne.
Jo Milne, founder of the charity CUREUsher, this week calls on the Health Secretary Steve Barclay MP to do more for people living with the condition Usher syndrome, the leading cause of genetically inherited hearing and sight loss and affects at least an estimated 10,000 people in the UK.
The progressive nature of Usher syndrome means people with the condition are constantly grappling with changes in their vision and hearing. There is currently no cure available, and the strain on the mental and physical health of people living with the condition is “exhausting and debilitating,” says Jo Milne.
At a London launch event this month CUREUsher and their partners – leading healthcare communications company – HAVAS LYNX unveiled The Story of US.
“A number of individuals families living with Usher syndrome contacted me,” says founder Jo Milne “especially in the pandemic – when we all became more focused on our mental and physical health. The sense of abandonment and lack of progress in research into a cure were brought to the fore, there was a real feeling of enough is enough.”
“With ‘The Story of US’, we’ve brought together people living with the condition, advocates, and some of the 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.”
Born profoundly deaf, Jo was diagnosed with Usher syndrome in 1990 and told she would lose her sight by the time she was 20. It was in fact at the age of 30 that Jo was registered as severely sight impaired and has been fighting to raise awareness of the condition ever since.
Key players in the Story of US are; Genetic research scientist Professor Mariya Moosajee (Moorfields Eye Hospital and Francis Crick Institute), Alex Norris MP (Chair of the All Party Parliamentary Group for Usher syndrome), Gill Maw (Nursing and Paramedic Head of Dept. from Sunderland University), and Claire Knapp (CEO of HAVAS LYNX), are lending their support and voices to the awareness campaign, all sitting on a panel discussion at the launch event.
The charity is calling for immediate action, a united response, from all those connected by Usher syndrome, to focus on fundraising for a cure, increased research and wider awareness amongst the public, healthcare professionals and politicians.
Visit www.cureusher.org/support to pledge your support.