About UsherLife

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What is UsherLife?

UsherLife is a truly dedicated website for people who have Usher syndrome. The name UsherLife has a double meaning – we have an Usher life and the website fulfils life in the Usher community. UsherLife also facilitates an informal group for people to meet online or outside.

What can UsherLife do for Ushers?

The Usher community in the UK and the rest of the world can come together to share their experiences, support one another and share information and knowledge via its egroup.
Its web site is an essential "Really Useful Stuff" information resource base which are put forward by Usher people themselves.
You can read and share Usher life stories from Usher people on their experiences, achievements, humour and positive media articles.
You can find out where Usher people meet together in person to socialise and do exciting stuff!
You can also find out career & employment opportunities working in / with the field of Usher, dual sensory loss and deafblind as well training courses available from organisations or groups to develop your skills.

Who runs UsherLife?

UsherLife is run independently by dedicated volunteers who have Usher themselves. The UsherLife website is solely maintained by the founder Nick Sturley.

I don't have Usher can I still be involved?

Yes, you can! UsherLife isn't just for Usher people, but also for their partners, friends, families and professionals in the Usher field.

And you don't necessarily need to have Usher as those with other degrees and forms of visual impairment and deafness are most welcome.

What was the reason for setting up this UsherLife website?

UsherLife founder and website creator, Nick Sturley, who has Usher Type 1 himself explains, ‘This potentially important website was launched on February 1st 2005, "For the last few years, I have been concerned and frustrated by the lack of access to information and sharing knowledge to one other, specially people with Usher syndrome through a dedicated base. I recognised that there was a big gap in the Internet – a place where the Usher community can come together to share, support and offer knowledge to one another.

"For example – there is Mobile Magnifier software for help in reading text messages in mobile phones and I know there are Usher people who want SMS communication, but were not aware of this new software. Another example is that there is Section 7 support available from your local authorities where Usher and deafblind people can use their funds to pay for support workers to help them fulfil their lives as best as possible. But where do they find the information? That's why UsherLife is there for – to offer these sorts of things, which were compiled by Usher people themselves.’

"Finally, there was one very good recent example – one Usher subscriber of an Usher–related egroup posted a message asking whether he should upgrade from being registered as partially sighted to blind as he did not feel comfortable with the latter. Other subscribers of the egroup responded, giving advice, experience and discussed that being registered blind offered more benefits than being registered partially sighted for a number of reasons such as claiming the highest possible DLA, half priced TV licences and so on.’

"That encouraged him to consider applying for the registered blind option in which he eventually did. He was claiming the low DLA rates at that time, so he applied for a review now that he had the blind registration behind him and he was recently successful in that and is now claiming the higher mobility rate and middle personal care rate. It comes to show what UsherLife can offer – sharing peer knowledge and experience.’

‘Usher people can involve themselves in UsherLife on an individual basis to help another Usher person; helping to campaign for their rights; helping to organise their own events and use UsherLife as a publicity route and so on. There are several possibilities and potential for UsherLife. I believe this is the first of its kind.