Thanks to an especially kind private donor, we are now able to get the recording of the Patients' Day transcribed
The next challenge will be to get the 50+ page booklet printed as last year. I am loathe to ask my husband again, as he has supplied all the print outs and programmes for the Patients' Day this year and last year, so does anyone know a nice friendly printer?? We would only want around 50 of them bound and printed - last year 100 cost £352 so we would be looking at around £200.
I know most of you are happy with the You Tube recording but it's not for everyone so, if anyone can help, please let me know.
I will be putting the You Tube recording up this week once I've finished mopping up from the Patients' Day. So please be patient
That's great, I definitely will buy one. I like to read and retread information and it means I can show it to others who would not or could not access YouTube.
May know of someone who could help, will enquire and see if they can do anything,
Hugs n love Sheena xxxxx
Brilliant news! I think if Hughes patients pay towards these costs by buying the finished product or buying in advance so that you can pay to have it published would be a good way to ensure you got the Patients' Day Conference transcribed. I for one would willingly pay up front as I was unable to travel to London. I do not think it will be possible next year either so I would buy a copy whatever the price, including paying for the transcriber to transcribe. I know how long it takes to transcribe interviews so I hope there are some people who are in the position of paying for the transcript and those who cannot afford it pay on a sliding scale.
Sorry, I misread what you wrote. You have a transcriber but you need a publisher. Well, maybe some patients will pay towards publishing costs. I know that is expensive too!
In future, why not ask if anyone on this site is willing to transcribe for free? I personally would be happy - I know its a long job, but feeling involved in some think which would be of benefit has its own rewards. Also, you might find a few volunteers to split the job (for example, 2 or 3 to transcribe different sections and 2 or 3 to proof read).
Another future option might be to design a printable booklet, and let people print it themselves if they don't like reading on line or want a copy to take along to doctors.
Good luck finding someone for this year though.
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Yes, I tried that Alison - please see - hughes-syndrome.healthunloc... but no one replied, hence the kind private donor stepping in.
On the other option, I am too busy to have the time to design booklets for transcripts which is why we need the printer to do this. So i don't think this will happen in the future either.
The main problem this year was the withdrawal of funding by GSK (due to the Benlysta problems) and the fact that my Sanofi contact has gone. Last year funding for the Patients' Day was very well covered, sadly not so this one.
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Sorry, I'm new to the site, and I didn't see your request. I'm dislexic, so my typing does need a proof reader, but I'm happy to have a go if it helps - I do transcribe oral exams for kids at my ELF school, so I know what a pain it is (and they know me well enough to expect a few mistakes). I've tried loads of voice recognition programs to do the job for me, but they never seem to work as well as intended especially if more than one person is talking.
I'm not always on line, and can go weeks without checking E-mail, and I expect this is a big job hence no other offers of help. So if you want my help in future, email me plenty of time before so I can make sure I'll have time.
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Thanks Alison, I appreciate that. Luckily we have the funds to pay professionals to do it - it's quite a job as there are over 50 pages to transcribe. Just waiting to hear about the printing
Thanks for your comments everyone There may be some help in the offing so I will keep you all posted Kx
I would hang fire as I've just sent the spec over to the person who might be able to find a friendly printer. I'll be in touch if it falls through
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