Hi, Wesley and HappyDaddy:
Great posts. I will be submitting them.
Ok....Wesley, you asked a question to me regarding who to contact regarding your type of research. Remember, the NMSS only looks at and approves applications for research grants. If one is not submitted to them regarding polyamines, etc., there is not much they can do. They have to have an application for funds in order to approve the funds and get such research started. I might suggest that you look up some MS researchers who are doing genetic research (such as Dr. David Hafler) and inquire with them regarding job positions. Remember, the NMSS does not "do" research themselves. They are an administrative and financial organization that only affiliates with and assists MS researchers. Check out their descriptions of the different types of grants they offer and see if you alone
fit the criteria for applying for a research grant yourself! As for your post in total, I will submit it to them as written (I have mentioned you before to them), and have ALREADY alerted them that a specific response would be greatly appreciated.
Well, the problem with the studies you are referring to, is a little complex. Although the NMSS (and like organizations) do have a little political influence (mainly legislative, though), getting involved or influencing a pharmaceutical company's clinical trials (which is what the study you are referring to is. It is being conducted by Teva.), not only presents a conflict of interest legally for a non-profit organization, but since they provide no funding toward such studies done by for-profit corporations (again, not legal), there would not be much "gain" in attempting to interfere with them. This is where we as MSers come in. We can influence, though, where the NMSS's funding is directed, IF the NMSS receives a request from a researcher to perform the type of study you would like to see done. If they receive no applications from researchers for funding for such a study, they cannot directly "initiate" by themselves that such a study be done. They can do an initiative indirectly.........i.e. posting that funds are available for research on "regeneration of the nervous system" or "immune regulation", etc., which is what they do post on their website.
Ok, we all do know that subtle "politics" do go on behind the scenes anywhere, but that has to be delicately handled by a non-profit.
Again, though, letting the NMSS know that if such a study as you suggest were to be submitted for grant funding, that we MSers would like to see them APPROVE funding for such a study, then definitely yes..........they will take that suggestion. In the meantime, if we MSers also encourage our doctors and any other researchers we might know of or come into contact with (and don't let up) to PLEASE apply for grant funds and here's the research we want them to do for us, THAT tactic will go a long way toward us getting what we want. I want to reiterate again, though, as I've done in another thread, we also want to be sure that enough substantive material goes along with our requests for research studies. A researcher and consultant with knowledge of the "jargon" who is AGAINST our particular suggestions, may be able to negate our simple "wishes". We also need to be armed not only with suggestions, but fairly valid substantive reasons or hypotheses for such a study being approved. I know it's hard to combat a medical researcher, but it can be done. I've done it myself. OR in the alternative, we need the "numbers".......i.e. an overwhelming show of MSers (via letters or something) who want the study done (i.e. approved by them)! Period.
And these types of suggestions, etc. are EXACTLY what the NMSS wants to hear about from us. Otherwise, they will appropriate funds based on other factors for our benefit. They need to hear from us. Which is what I'm gonna do!
Keep the posts coming!