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mellivora,See if you can put it up without the link. Maybe mention that they can go to the official NORD site and look up "donations to the POIS cause", without actually puting a link. Something is better than nothing I figure!
Quote from: daveman on 23/09/2011 18:18:33mellivora,See if you can put it up without the link. Maybe mention that they can go to the official NORD site and look up "donations to the POIS cause", without actually puting a link. Something is better than nothing I figure!Hi Daveman,Yes I tried to look for a way of doing that, however searching for POIS on the NORD site doesn't bring any results. I struggled to find a way of navigating to a page that allows someone to specifically donate to the POIS fund without using the direct URL link...but I just figured it out. Done! But not ideal as my comments appear a little way down the youtube page
What exactly is the grant going to do to help find a cure?
Itsthatskater, good question and very valid:If you think about it, our biggest problem is recognition! Few regular doctors recognize POIS as a disease or illness in itself. It is seen as something else, something existing and ranges from psychosomatic to who knows thyroid or Lyme disease or whatever.Doctors are like a cross between engineers and lawyers. On one side technical and knowledagble about the science of the human body. But it is complex, so like lawyers, they base their decisions on past proven and documented cases. There's a very strict guidline as to how these documented cases and testing schemes should proceed, being, after all, that so much is based on the results.The NORD research grant is a seed grant! Although it is costing us an arm and a leg to raise the $33,500, it's very little. It's barely the salary of one engineer for a year! Any research program will likely involve several very highly trained and skilled professionals. But the professionals can combine grants to support ongoing studies, so there's a synergy which permits them to achieve quite a bit with little $$.A seed grant program is a tremendous opportunity to tap into this great experience to "validate" a medical course. Exactly what we need.We all know that a known doctor released a few papers recently. This release, in spite of the fact that the study was poorly conducted, based on his experience, raised the level of POIS to something at least "out of the psychosomatic category". Failures in procedures however still present great problems of credibility.However a properly conducted study, even if it did nothing more than validate what we already know would open the way to REAL acceptance.First I expect we will do much more than validate what we already know. We will likely clearly identify the real cause, in black and white, and full validated and peer reviewed. And this identifiaction, may or may not involve auto-immune or testosterone or whatever. What interests me and all of us, is that we believe and trust what comes out of the study. With NORD and their level of commitment and experience in rare disorders THIS will happen.Second. The validation if it doesn't identify a cure, will at least open a clear and real path to further in depth and certain investigation. It will validate for our local doctors, what we have and how it works and establish directions for treatment. And for us it will point to a real direction. We have seen how, once pointed in a direction, we can work quickly and efficiently in discovering remedies and new treatments. Imagine if now we are all pointing in the same direction, and whatsmore we have the backing of our local doctors.I don't want to say that the seed grant will discover THE CURE, but without it, we will get very little further than we are now. We will continue to live without a real answer, we will be fighting between us becasue some believe one thing and others believe another, our doctors won't support us, and POIS remains as it is now, IN LIMBO.
Very well said daveman
Could not have said it better, Daveman!Great post!My sentiments exactly!!
POIS RESEARCH FUNDING PLEDGE DATABASE Guys, this is CRITICAL. Feedback, please!!What do you think of yesterday's post by me and daveman?http://www.thenakedscientists.com/forum/index.php?PHPSESSID=f1c91646606fe05966112da4a8b83702&topic=6576.msg367730#msg367730What do you think of OUR OWN database pledge program? Or would you prefer to use www.thepoint.com with someone else managing your donations (and tax deductions)? Let's PLEASE get this out in the open! Post a reply. YOUR input is needed!YOUR POIS-FREE FUTURE DEPENDS ON THIS, SO PLEASE SPEAK UP. NOW!!!
Quote from: lauracostis on 22/09/2011 05:24:34Quote from: demografx on 21/09/2011 04:11:13Quote from: lauracostis on 21/09/2011 01:01:42We should be sending requests for donations to organizations and private donors who give money. One or two outside donors could easily fund the minimum amount we need to get started. I know somewhere there are lists of organizations that allocate money to charities and medical research to people who request and solicit them. We should start soliciting these entities ASP.Laurac, excellent idea! Can you take that on as a project as we pursue our own constituency?I would but I start a clinical rotation on monday and I will barely have a enough time to complete regular activities of daily living. am going to see what i can do, do you have a clue where to start. And is anybody else willing to do it.
Quote from: demografx on 21/09/2011 04:11:13Quote from: lauracostis on 21/09/2011 01:01:42We should be sending requests for donations to organizations and private donors who give money. One or two outside donors could easily fund the minimum amount we need to get started. I know somewhere there are lists of organizations that allocate money to charities and medical research to people who request and solicit them. We should start soliciting these entities ASP.Laurac, excellent idea! Can you take that on as a project as we pursue our own constituency?I would but I start a clinical rotation on monday and I will barely have a enough time to complete regular activities of daily living.
Quote from: lauracostis on 21/09/2011 01:01:42We should be sending requests for donations to organizations and private donors who give money. One or two outside donors could easily fund the minimum amount we need to get started. I know somewhere there are lists of organizations that allocate money to charities and medical research to people who request and solicit them. We should start soliciting these entities ASP.Laurac, excellent idea! Can you take that on as a project as we pursue our own constituency?
We should be sending requests for donations to organizations and private donors who give money. One or two outside donors could easily fund the minimum amount we need to get started. I know somewhere there are lists of organizations that allocate money to charities and medical research to people who request and solicit them. We should start soliciting these entities ASP.
For the section "other" please, write us in a post what is this reason, it would help a lot (even if we are not in a quantitative marketing research... )
I have just written to a major condom manufacturer asking for help with [POIS Medical Research] funds!