Folks: Sorry if this is an off topic mail, but am reproducing a mail I have posted in my RP group for the benefit of non-members of that group. This is also interesting for others who want to know about development in finding a cure for RP and would like to inform their friends/relatives. Read on. Dear members: I am writing to you all after a really long time. However, I wanted some developments to happen before I could turn to you all and report something good. Of course, developments have happened much faster in the last few weeks and they all indicate that we may be closer to some good news. First of all, I must report that the first serious clinical trial to fix Artificial Implant (AI) in the place of decayed retinas will take place sometime in 2009 in India. This is done with the initiatives of Narayana Nethralaya and doctors from the US represented by Dr. Rajat Agarwal, who visited Bangalore arly November to screen suitable RP patients for clinical trial. I was told that 18 patients have been chosen and it looks like they may receive the first artificial implants next year. I would like to mention that this is only the first of many efforts that may follow in the coming months and years. Clinical trial rules restrict the participation to a particular area. Which means if it is conducted in Bangalore, only those in and around Bangalore can take part. However, there is a possibility of taking this trial to other places, in which case all of you will have a chance to take part in the trial. Also, you have to qualify by subjecting yourself to the screening test. This is a set of medical parameters which would decide who qualifies and who doesn't. And this is only for Artificial Implant. If you don't qualify for this it doesn't mean things are over, because we are also looking eagerly at developments in gene and stem cells therapy, which are also encouraging. In all probabilities, we are extremely confident than ever before of having some treatment or the other for RP in few years time. However, we need to do some preparatory work for that. First having a foundation for RP patients. I am happy to let you all know that efforts to have a national level RP foundation has begun in earnest. I would like all of you to be a part of this initiative because having a foundation would provide us a common platform, irrespective of our location within India. I have also understood that such foundations are already functioning in other parts of the world and it is time for us to have one in India. The foundation is likely to be a trust which would work towards a coordinated strategy to bring modern treatments for RP to India at a much affordable and (in some cases) for free if necessary. Also, this would provide doctors and patients an opportunity to talk in one voice. Doctors will get a chance to think apart from just breaking the bad news to the patients and would inform them of treatment possibilities and also rehabilitation/career counselling facilities (which the foundation is looking to provide as well). We will have the possibility of conducting research studies to learn how deep is the impact of RP in various communities within India and this will give us more facts to argue our case with the government and convince them how RP can slow down economic growth (since it mostly affects people in their productive age). The list of benefits is of course endless. I would first request you to write to me about the idea of making this foundation all encompassing and useful to all of us. Of course, people involved in this initiative are too keen to take inputs from us. The foundation will have nodal organisations in all regions of the country, which would give you an opportunity to register. Also, the national level RP registry, the comprehensive database of RP patients in this country will be created under the foundation and would give us the idea of the deeper impact of the condition and reaching out to all in the event of successful treatment being available. I would like to end this long mail by stating that though the cure may not have exactly arrived in India, we are at least going to create the momentum which would include us in the global effort to find a cure. So, stay cheerful and think how you can contribute. Warm regards, Subramani To unsubscribe send a message to [email protected] with the subject unsubscribe.
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