CURE USHER
CURE USHER
Recently I have been working with Cure Usher an organisation that was toatally new to me until last October when I was priviledged to photograph their annual gala ball and fundraiser event in Gateshead.
CUREUsher was formed by Jo Milne when she saw the need to create a dedicated charity for Usher syndrome in the UK. Since then, CUREUsher has gone on to gain a committed team and board of trustees.
Jo Milne recently photographed at the Cure Usher Gala Ball in Gateshead
Usher syndrome was first described by the founder of modern ophthalmology, Albrecht von Graefe, in 1858. Despite this, there’s little public awareness about the disease today. That’s because Usher syndrome is a rare genetic disease.
It’s incredibly important that they raise awareness, so that each person living with Usher syndrome is better understood and supported by the society they live and work in.
Usher syndrome causes hearing loss, and a progressive eye disorder called Retinitis Pigmentosa (RP). It can also affect balance. It’s a different experience for everyone. For most people, hearing loss occurs from birth and their sight deteriorates as they get older.
People with Usher syndrome are often diagnosed in childhood or early adolescence depending on the severity and type of the condition. There is currently no cure for Usher syndrome, but a genetic test can confirm the condition and people with Usher syndrome are then more able to decide on the best help to adapt their lifestyle.
I was recently asked to travel to Westminster to document a Cure Usher event at Portcullis House one of the Parliament buildings.
This was just one of many events at which the Cure Usher team used to lobby MP's to raise awareness of Usher syndrome to increase funding and change policies to prompt research. Further more events like this help to encourage additional education on Usher syndrome with GPs and healthcare professionals.
They also campaign to raise public awareness of Usher syndrome and the red and white striped canes and dogs’ harnesses that represent them.
At the London event I was privilidged to meet many MP's and the Minister for disabled people the right honourable Tom Pursglove. This was also a great opportunity to meet their new Patrons Mark Jordon and his wife laura Norton; who themselves have just had their own children diagnosed with Usher Synrome.
If you would like further information on the charity or would like to make a donation to their cause please see their website here:
CUREUSHER
Portcullis House opposite Big Ben
Mark Jordon - Patron & Actor
Alex Norris MP
RtH Tom Pursglove MP Minister for Disabled People
Jo Milne and her Husband Stephen at the London Event