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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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FlashHack
 Post subject: CTEVD Study Update
PostPosted: Tue May 25, 2010 8:30 am 
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Location: Portland, OR
Email From Buffalo:
Quote:
Dear _______:

Thank you for your application to the CTEVD research study being conducted by the Buffalo Neuroimaging Analysis Center and the Jacobs Neurological Institute in Buffalo, NY.

At this time, we have completed enrollment of MS patients who are male, aged 40-49, with a disease course of relapsing-remitting.

Thank your for your interest, patience and support for this exciting new research. We hope to conclude the study in Spring 2011.

Sincerely,

Christina Brooks

Spring 2011! So much for a sense of urgency...I mean...yay, more research!
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Billmeik
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PostPosted: Tue May 25, 2010 9:23 am 
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plus they are only going to help 62% of msers
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ozarkcanoer
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PostPosted: Tue May 25, 2010 10:29 am 
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OK.... Here I come to the defense of BNAC and their CTEVD study. I was just at BNAC last week for the self-pay testing program. BNAC is working very hard and doesn't have much funding. Many people are working 7 days a week !!!! I had my scans on Wednesday and people worked through the night to get me my results on Thursday morning.

The BNAC group is a small group of dedicated researchers who want to see the CCSVI science work out. They need our help not criticism. Many people are fundraising for BNAC because they need the $$$. Ashton Embry gave them a $75,000 challenge grant as long as we patients do grass roots fundraising via MStery parties. The Wheelchair Kamikazi was at the first MStery part in New York City !!! Please go to bnac.net for more information. The proof of CCSVI will not happen overnight no matter how much we want it.

I am holding a MStery party. I hope to raise $1000.00 or much more. This is what BNAC needs from us and they will deliver the results.

ozarkcanoer
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FlashHack
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PostPosted: Tue May 25, 2010 10:45 am 
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Uh, that's what I was doing...raising awareness.... :roll:
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Billmeik
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PostPosted: Tue May 25, 2010 11:06 am 
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I dont see why 40% of people wont pay and get a negative for their money.
Just getting real and speaking truth and all that. If you are rrms stay away.
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mangio
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PostPosted: Tue May 25, 2010 11:08 am 
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I read recently Direct-MS has now contributed 125K to BNAC?

They have our full support.
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ozarkcanoer
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PostPosted: Tue May 25, 2010 11:22 am 
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mangio.... I think you are right about the $125,000 !! He recently contributed another $50,000. As for not getting your results from CTEVD study, well I signed up for that but never was called. I would have participated in it even if I didn't get my results. CTEVD is blinded completely. I think that is why participants don't get results. But then you don't have to pay either. You get to contribute to the science either way. It is a personal choice.

ozarkcanoer
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mangio
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PostPosted: Tue May 25, 2010 12:23 pm 
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Ozarkcanoer,

Very happy for you. Wishing you all best.
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MS_mama
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PostPosted: Tue May 25, 2010 2:02 pm 
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part of the delay is due to lack of funding as per dr. Zividinov at the AAN convention. It's not like they have any big backers as Teva and Biogen did to get their therapies to market quickly. This is sloooowww university based research.

_________________
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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pegmegrund
 Post subject: Re: CTEVD Study Update
PostPosted: Tue May 25, 2010 5:17 pm 
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FlashHack wrote:
Email From Buffalo:
Quote:
Dear _______:

Thank you for your application to the CTEVD research study being conducted by the Buffalo Neuroimaging Analysis Center and the Jacobs Neurological Institute in Buffalo, NY.

At this time, we have completed enrollment of MS patients who are male, aged 40-49, with a disease course of relapsing-remitting.

Flash - sorry you didn't get into the CTEVD study. I just saw a post on FB
http://www.facebook.com/pages/CCSVI-in- ... 297?v=wall
about an MRV study at OSHU - have you heard any details?

Billmeik wrote:
Just getting real and speaking truth and all that. If you are rrms stay away.

Billmeik - why would I stay away from BNAC if I'm RRMS? Did I miss something? I was just there last week for the same testing as OC... Your truth may not be true for all...

I support BNAC and what they are doing. Otherwise I wouldn't have paid to be part of their testing.
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FlashHack
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PostPosted: Tue May 25, 2010 6:58 pm 
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What!? That's my neuro and he told me I could be subject #1. Guess I need to drop him a line!
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pegmegrund
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PostPosted: Tue May 25, 2010 7:40 pm 
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FlashHack wrote:
What!? That's my neuro and he told me I could be subject #1. Guess I need to drop him a line!

He's busted by 'the elephant in the room.' Good ole Facebook! :lol: :lol:
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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