Funding for Buffalo CTEVD study !! What can WE do !!??

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Funding for Buffalo CTEVD study !! What can WE do !!??

Postby ozarkcanoer » Sun Nov 08, 2009 10:53 am

From Sawdoggie on another thread :

"The good news is, they are very optimistic that they are on to something and the first phase of the study will be released either late this month or early in December. I specifially mentioned to Dr. Weinstock-Guttman that the press release and press conference seemed very confident and she confirmed that it was. The first phase is going to include roughly 500 people and after this they will make a determination (as I understood it) if they actually need to continue with the full 1700 or if the results are strong enough to stand as they are. There are some funding issues as well that could limit the study."

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NOTE : "THERE ARE SOME FUNDING ISSUES AS WELL THAT COULD LIMIT THE STUDY" !!!!!!!!!!!!!!!!!!!!!!!!!!!!!

OK, I've been a fundraiser for the NMSS ever since my diagnosis. I have raised somewhere on the order of $6,000-$7,000 in the past few years by organizing an MS Walk team for 2 years, by encouraging my family to donate to the NMSS in lieu of Christmas gifts, and by sponsoring 6 bike riders for the past 2 years via the MS Bike Ride at $75 a person !!!

HOW CAN WE MAKE SURE THAT THE BUFFALO CTEVD STUDY HAS THE FUNDING THEY NEED !!!!!!!!!!!!!!!!!!! :? :? :( :(
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Postby bestadmom » Sun Nov 08, 2009 11:14 am

SUNY Buffalo is a state run public university. I would expect that the state would fund studies.

I graduated from another SUNY university and getting donations is not easy. The alumni donations do not approach what a private universiy gets. The NMSS should kick-in some $$ if the results are promising, based on their press release in October.

There is also a fund at Buffalo dedicated to this study. Needled posted the details on the other thread.

Buffalo will have to be proactive to get donations. They've been somewhat quiet until now - even their press release last month wasn't pushed out on the standard pr newswires in the heath and science topics. Maybe when they are ready to announce they are really on to something, they will get more aggressive.
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Postby jay123 » Sun Nov 08, 2009 11:33 am

If the results are as great as we hope for with the first 500 hopefully they will move on quickly to an intervention stage rather than spend the money on another 1200 mri's. If they would move on to interventions I would be happy to help raise more money!!
Remember, they are only doing an observational study, not correcting any problems.
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Postby ozarkcanoer » Sun Nov 08, 2009 11:42 am

Jay123... good point. But it will be the observational study that will convince the larger community of MS neurologists and MS researchers. Only HARD SCIENCE will convince them. This study is very important !!!! I'm participating in Dr. Haacke's pilot study in Detroit, but since it isn't a blinded controlled study it won't have the same impact as the Buffalo study. If the issue is money, then we should somehow make sure the CTEVD study doesn't fail for lack of $$$$$ !!!!!!!!!
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Postby Needled » Sun Nov 08, 2009 12:45 pm

Funding CCSVI research -- one of my favorite topics. Here's the link to Jacobs CTEVD study and funding. The last paragraph has the direct link to the on-line donation website and the dedicated fund. This is new since I donated, but I bet it works. Who's wants to be the first to try it out and let us know? http://www.bnac.net/?page_id=497
I'll also update the other post with this link.
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Postby jay123 » Sun Nov 08, 2009 7:40 pm

Yes, you are right they do need the blinded study so more MS research dollars can come in. I shouldn't be so cynical.
I'm just frustrated in that, hey - people have a blocked jug, it should be fixed whether you believe it's part of MS or not, it's plainly not right!
But my personal thinking is then they will find out it's part of MS, imho.
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