Until this is done I’m going to stop posting here, but please don’t think the blogging is going to stop. If anything, the blog will be more active when is is embedded into our main site.

Thanks for looking in over the last three years.

DCH

http://www.theworldsfavouritefilm.com

If you have forgotten to send a present or Christmas Card to someone - it’s too late now. Why not make a small donation and give them a mention instead at http://www.tinyurl/rpchristmas?

Have a good one … David

Actually, even if we were larger it would be a waste of time and money duplicating their work, far better that one organisation represents people on these general VI issues, leaving us to concentrate on RP specific ones.

Anyway, RNIB’s two latest documents are reproduced at http://www.brps.org.uk/newsevent.php?tln=newsevents&newseventid=173

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Dear David, thank you for this.  I’ll be writing a cheque and sending it by post.

Thank you, much appreciated

I can’t help feeling there’s a risk of duplication here.  What is Sue doing that Carole Holmes’s team can’t do?

Sue is working to make people aware of our services (and research work), so that we can provide them with the support that’s needed and increase our membership (which will ensure we remain representative). A spin off is that this tends to increase income for the medical research fund too. Carole’s team as a group of volunteers does provide the helpline and befriending service of course, and that’s not likely to change as they do a great job, but Sue’s work is about reaching out to new RP people who may not know about what we can do to help.

I also feel that any consultant worth his salt ought to do more than tell a patient that he’s incurable: if he can diagnose the disease, he ought to be able to point the patient in the direction of help.  If that’s not the case. perhaps Sue ought to be reaching out to consultants.

Exactly right! We identified early on in the project that Sue’s time was not very effectively used reaching out to individuals directly. Rather, we need to work through the hospitals, eye clinics, social services, local VI charities and societies, community groups, online groups, professional bodies and training groups, and so on. This has proved to be much more effective, for example Sue ran a training session at Sheffield Teaching hospital last month and earlier this month I addressed a group of student ophthalmologists at Oxford University. We have distributed 2,000 copies of our DVD, largely through the hospitals, and in turn they are being passed to new RP patients. We are getting there. Consultants are never likely to have the amount of time that is needed to support patients properly (after diagnosis) but if we can get them into the habit of signposting the charity we can provide the information and support services much sooner than if we wait for the patient to discover us him/herself.

I hope this doesn’t sound mean-minded: I certainly don’t want to belittle Sue’s work.

Not at all taken that way, constructive input and queries from members on what we are doing is really welcome.

Happy Christmas!

And to you and yours.
David

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http://www.economist.com/node/17647663?story_id=17647663&fsrc=rss

http://allansgranddayout.bandcamp.com/track/hold-me-close-this-christmas

Our Christmas concert (this was our second and we want to make it an annual event) was a brilliant presentation from 7 very talented acts, including a platinum selling artist, a singer who used to perform with Aretha Franklin, a saxophonist who has played with dozens of the biggest acts in the world, our own member the very talented and charismatic Lucy Broughton-Taylor, and lots more. The performances were fantastic and the atmosphere was good.

Disappointing though was the number of people who booked tickets. We really needed more people there to make it a fundraising success and to give a good audience to the artists who had given their time and talent free of charge. Perhaps the weather and the economic situation was a factor, but after so many people had made the effort to stage a high quality event it was disappointing that we didn’t get more support. 

In 2011 we would like to develop this event further and if any readers would like to help us organise and promote it, whether in Milton Keynes or perhaps in your local area, please let me know.

The story is a great one and deserves attention, as long as it is not oversensationalised. I hope too that maintream media stories about retinitis pigmentosa and the charity will help all of our members, and encourage more support for our work.

Several times over the last three years of writing this blog I have produced items about the development of retinal implants. Today sees the release of more news, this time from The Royal Society as they publish a paper from a German research team.

Professor Zrenner and his colleagues have reported some interesting and exciting results, using their subretinal implant. They report subjects being able to identify objects, move around a room, read (very large!) letters and read a clock face.

All of this is genuinely exciting and Prof Zrenner is highly regarded. It’s true to say though that though this technology does offer hope for the future, it’s still in its early stages, and the surgery and the subsequent process of learning to “see” using it is complex. Don’t forget too that the devices are also only suited to people who have lost their sight completely, and our aspiration as a charity, and on behalf of our members, is that we should identify and perfect treatments that prevent the degeneration of the retina in the first place.

This report is a very interesting read (the story is at http://www.brps.org.uk/newsevent.php?tln=newsevents&newseventid=167) … just make sure that you absorb it with some caveats in mind.