This post almost got postponed to the New Year, given that this week has been so, so tiring in the wake of Ruzbeh’s epileptic attack. But I couldn’t bear the thought of letting Norrie disease get the better of me, so here goes…
In the aftermath of my discussion with the retina specialist (read my previous blogpost), I felt a pall of gloom descend upon me. What now? I wondered.
For a while I pondered reading up on other symptoms of Norrie disease (ND), something that I’ve been putting off for sheer lack of time.
And yet. And yet.
My thoughts were in turmoil: What about all the hours I spent reading stuff. What about my conviction that one day it will be possible to reverse the blindness associated with ND.
Research is not about saying it can’t be done, research is about saying it needs to be done, and then finding a way to do it. Or so I believe.
And then my thoughts turned to the NEI (National Eye Institute). If you have never heard of the NEI, this is what it says on their website:
As part of the federal government’s National Institutes of Health (NIH), the National Eye Institute’s mission is to “conduct and support research, training, health information dissemination, and other programs with respect to blinding eye diseases, visual disorders, mechanisms of visual function, preservation of sight, and the special health problems and requirements of the blind.” The NEI was established in 1968. It has a budget of approximately $675 million (FY2014).
What if they could gather a few researchers for a small problem solving session? The objectives of this meeting would be the following:
i) To lay down step by step, what needs to happen for vision to be restored in a case of ND
ii) To identify from step (i), those areas where research is currently going on & those which are not the subject of current research
iii) To identify from step (ii), those areas where some ND specific research needs to be done in conjunction with ongoing research
If funds need to be arranged for this brainstorming to happen, then I would be happy to try and secure them. I don’t know how, but I’ll cross that bridge when I come to it.
My point is this: It is true that I can’t put a million dollars on the table for ND related research, but if we could define the way to solve the problem of vision (or lack of), then maybe I could find a way to obtain funds for individual projects.
So I went ahead and hammered out a letter to this effect.
Then I pondered for a bit about who to address it to. I figured I would send it to Dr. Paul Sieving, Director, NEI.
Then I pondered a bit more – what if the Norrie Disease Association (NDA) has had some dealings with the NEI in the past? In that case maybe they could tell me who to get in touch with. So I wrote to John Miller, President, NDA. No, the NDA has not been in touch with the NEI.
And yet I hesitated. I really want this brainstorming to happen. No more no’s. Perhaps I ought to route my request through the NDA? Perhaps that would strengthen my case? Hmmmm. Yes, I think I will try the NDA route. Let’s see where it leads.
Till next time then,
Meenu.
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