So now, all of a sudden, the CMSS is on board with CCSVI research. WTF mate? They just grudgingly offered a grant for the token amounts of $100,000.00 per year for 2 years that was the laughing stock of the research community. Now they leap on to the CCSVI bandwagon the very same day that MS patients and supporters were rallying across Canada for scanning and treatment. What an opportune time to ask the Government for ten million dollars.
I am extremely skeptical of their astonishing behavior. For months now, since the CTV Zamboni story in November, all that came from the MSS in regards to CCSVI were negative comments and refusal to act on this promising, non drug treatment. I have serious doubts about the sincerity of this organization.
I wonder who they plan on giving the funds to. Will it be "everybody's sweetheart" Lou Ann Metz or perhaps my buddy Mark Freedman? Oh wait, that's right, Freedman is busy trying to ensure no more patients die in his current stem cell study. It's a shame that the ten million didn't go to a truly non profit MS organization (Direct-MS)Will all the ten million go to the CCSVI study or will they use some of it for "other MS studies"? I don't feel that they should be duplicating what BNAC has already done, so what are they planning on doing? I think they should do a study where they have groups of non MS people and half the group gets their jugulars clamped shut and the the other half do not. It would be great if they chose subjects from the CMSS so they could experience firsthand what it's like to not have proper blood flow from the brain. I might even donate some money to see that one!
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I would like to volunteer for this study. I can even bring my own vise grips.
ReplyDeleteYes, I would donate to see that, too. If you give the money to a ccsvi non believer, it would be like a great payday for them. And then they can fix the results to fit what they were saying before about how it was a neuro problem and not vascular. I don't trust the mss or the neuros AT ALL.
ReplyDeleteI love your ironic wit and (justified) anger at all this. It almost makes me physically ill (my own lame attempt at irony?)to think of all the corporations that posture and pose in public and then behind scenes start to hunker down with what they really care about-- the money!
ReplyDeletehey there danger!! below is a link to my conversation with clayton ruby(one of canadas top lawyers)about discrimination and the canadian govt. it doesnt go well and was very discouraging to say the least.
ReplyDeleteccsvi society is on its way to reality...
http://www.facebook.com/notes/crazylegs-leitner/letter-to-clayton-rubydiscrimination-of-ccsvi-and-the-canadian-govt/399707709384
CrazyLegs
Your headline is very interesting. I do know that MS Society advocacy volunteers have been in Ottawa the last few years at the same time of the year in May to meet with MPs. This has been publicized, including in Macleans last year. I guess the better question is how coincidental the demonstrations occurred when they did, rather than the MS Society taking advantage of the rallies. And now I wonder if this comment will be approved by you.
ReplyDeleteHello Ginger i am so glad you have this blog so we can enjoy this experience with you.Friday night i attended a fundraiser for a pastor of the local cowboy church.He is in a wheel chair and will be on his way to india after they raised the full amount for him on friday.He then put me in touch with a fella from toronto who just returned from india,and i am hoping to bring him to your blog so he can see the advancements you have made.maybe you both can share experiences with your readers.
ReplyDeleteInteresting that you say to donate to Direct MS "It's a shame that the ten million didn't go to a truly non profit MS organization (Direct-MS)." (I copied and pasted your words so I did not get them wrong). I wondered about this charity so I checked the Revenue Canada site to see their latest information return. All charities must (by law) file with Revenue Canada every year. The latest return they have (filed in 2008) shows over $550,000.00 in the bank, and you say we should support them because they are giving money to research????? Well I was at the Direct MS session where they paid (and I am sure it was big bucks)to have Dr Zavidinov (and the other researcher from BNAC) come to Calgary to talk about CCSVI and I heard from the 2 researchers the very same thing that all of the neurologists you slam have been saying, which is to stay on your disease modifying drugs, and to wait for PROPER research to be completed so that it will become clear IF CCSVI IS a cause of MS, is caused by MS etc. So, at this presentation Ashton Embry gave the researchers $75,000. Pretty measly since he has over $550,000 (yes that is over fifty five thousand of peoples dollars) sitting in the bank. Check out this link if you don't believe me. http://www.cra-arc.gc.ca/ebci/haip/srch/t3010form19-eng.action?b=868267568RR0001&e=2008-12-31&n=DIRECT-MS&r=http%3A%2F%2Fwww.cra-arc.gc.ca%3A80%2Febci%2Fhaip%2Fsrch%2Fbasicsearchresult-eng.action%3Fs%3D%2B%26amp%3Bk%3DDirect%2BMS%26amp%3Bp%3D1%26amp%3Bb%3Dtrue
ReplyDeleteIt makes me mad when you try and get people who are angry, frustrated and want answers to boycott an agency (the MS Society) which does MORE than fund research, they provide support, programs funding and services to everyone (families of people with MS too) and you tell people to support a charity that does nothing to provide services, support, funding, advocacy, programs etc and who keeps all this money in the bank instead of sending the money to research which at least the MS Society does. (although they don't send enough for you). I guess unlimited grants of $200,000 is nothing...but a measly $75,000 goes to BNAC and that is AFTER covering their costs to come to Calgary, renting out all of the rooms at the hotel (and that is NOT cheap!!!!) and that is something worth supporting???? Give your head a shake and realize you are not making any sense. All you are doing is trying to rile people up and passing along incorrect information. You should check Revenue Canada and see Direct MS last return before you start telling people who to support. Unfortunately not everyone would think of checking this out, so I have included the link so they can and can make an informed decision rather than listening to the rants of someone who does not even bother to get her facts straight before going off half cocked on this blog.