Portrait no.21

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21 of 26 Jay Parker had been in his job as social media officer for the MND Association for five months when we interviewed him at their HQ, David Niven House in 2015. “MND ranks quite highly on the cruelty scale. It seems like torture to me. I couldn’t imagine having it. It has scared me and it makes me want to do things sooner in life rather than later just in case there’s something awful lurking round the corner. Since starting here I’ve seen lots of documentaries and things like that about people who have lived a normal life, quite happy then suddenly were just struck down with MND and it destroyed their lives. So yeah, it’s high up there for a terrible disease. In my job in social media we can measure success in numbers. Since the Ice Bucket Challenge the likes on Facebook and followers on Twitter have more than doubled. My goal would be to keep raising that awareness. Making sure people know what MND is. In fact I’m even doing that in my own family. I’ve only been here five months but I’ve fed back everything I’m learning in this job straight to my family – My sister and mum and dad. They’d not heard of MND either but now they feel exactly the same way as me. They all think it’s absolutely horrible.” To help the MND Association donate using this URL https://www.justgiving.com/fundraising/26miles4mnd

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To support the work of the MND Association, donate here – www.justgiving.com/fundraising/26miles4mnd

or text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you 🙂

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Portrait no.17

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17 of 26 Modern computer technology has been a game changer for people with motor neurone disease. It enables those paralysed by the disease to continue to communicate and control their environment (turning on lights, closing curtains etc) and even to move around by using their eye movements and any other small bodily movement they may have left. Adam Waites is Head of Assessment for Smartbox Assistive Technology, a company that creates assistive technology solutions, helping people with disabilities to do things that everyone else takes for granted. We interviewed Adam in October 2016. “To control a computer with your eyes using “Eye Gaze” technology you have two infrared emitters either side of a computer screen and a camera underneath in the middle. Those infrared emitters create a glint in the surface of the eye. The camera is then able to see where you are “eye pointing” on the screen. So fundamentally your “Eye Gaze” then becomes a glorified mouse and you can control a computer just like using any other cursor. There was a niche in the market when Smartbox first started that no-one was really addressing which was to adapt a computer as a communication aid. Paul Hawes who founded Smartbox couldn’t understand why the assistive technology companies that were out there weren’t using computers. Those guys that made dedicated devices and were the only options ten years ago then missed the boat. We came in and took that market share and were seen as being forward thinking. We use “One size fits one” as our catchphrase when people ask “what’s the best thing?”. Our response often is “well that’s not an easy question to answer because it depends on you”. People’s communication aids are becoming more and more personalised – less generic and more about the user. So we’re seeing lots of interest in voice banking now. People who are losing their voice record and bank it and then have their own voice synthesised. There are also now a couple of teams around the world exploring Eye Gaze driving. There are some safety issues with that, but there has been some success!” . https://www.justgiving.com/fundraising/26miles4mnd

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