Denied CCSVI table at MS Walks
Posted: Sat Feb 26, 2011 4:26 pm
Hi all:
I wanted to share a disturbing development from our corner of the country. I contacted our local chapter office at the beginning of the month to inquire about having a CCSVI table at the MS Walk. I was told it would be okay, but like any MS drug company, it would cost $3000 (laughing hard now) to have it at the start area and $1500 (laughing not as much, since it's not as expensive, lol) at the 2 mile turn around park area.
I wrote back, that I was a private citizen with MS, not a deep-pockets drug company and there was no way I could afford $1500, let alone $3000 to disseminate info that they should be providing for their clients! I was told that they have set these amounts to keep their overhead at a certain amount, blah blah blah.
I wrote back that I was very disappointed since this was going to be my 5th MS Walk and my 2nd year doing the MS Bike ride and left it at that.
There's more to this story, but I'm waiting for the okay to post that part-- suffice it to say that now THE WORD has come down from on high (National office) that no CCSVI tables will be allowed at all!
If anyone would like to see my verbatim email exhange with the local chapter, let me know, and I'll post it.
Pretty lame. The NMSS is "sponsoring research" that will take two years, but in the mean time, they sure as hell don't want anyone to learn about CCSVI!
I wanted to share a disturbing development from our corner of the country. I contacted our local chapter office at the beginning of the month to inquire about having a CCSVI table at the MS Walk. I was told it would be okay, but like any MS drug company, it would cost $3000 (laughing hard now) to have it at the start area and $1500 (laughing not as much, since it's not as expensive, lol) at the 2 mile turn around park area.
I wrote back, that I was a private citizen with MS, not a deep-pockets drug company and there was no way I could afford $1500, let alone $3000 to disseminate info that they should be providing for their clients! I was told that they have set these amounts to keep their overhead at a certain amount, blah blah blah.
I wrote back that I was very disappointed since this was going to be my 5th MS Walk and my 2nd year doing the MS Bike ride and left it at that.
There's more to this story, but I'm waiting for the okay to post that part-- suffice it to say that now THE WORD has come down from on high (National office) that no CCSVI tables will be allowed at all!
If anyone would like to see my verbatim email exhange with the local chapter, let me know, and I'll post it.
Pretty lame. The NMSS is "sponsoring research" that will take two years, but in the mean time, they sure as hell don't want anyone to learn about CCSVI!