Canada MS Society-deserves its own thread IMHO

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

Canada MS Society-deserves its own thread IMHO

Postby bohemianbill » Tue Dec 15, 2009 1:29 pm

so i will recap my communications with the Canadian Ms Society ,

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Date: 23/11/2009 4:20:00 PM

initial email regarding CCSVI as seen on CTV W5 requested Society take a more active role this very exciting new research -(a wait and see just not acceptable in my humble opinion.) and i indicated this in my email.

http://ccsviresearchtransparency.com/in ... ?topic=9.0

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From: Bill
Date: 24/11/2009 11:17:30 AM
To: stewart.wong@mssociety.ca

Subject: Great News--MS CANADA TO OFFER GRANTS FOR CCSVI RESEARCH

The Society has come to there senses and after a great deal of pressure as now announced a funding competition for CCSVI. We the people have been heard

http://ccsviresearchtransparency.com/in ... topic=10.0

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From: Bill Date: 06/12/2009 7:12:34 AM
To: info@mssociety.ca
Cc: msessex@bellnet.ca

Subject: CCSVI 100 % Transparency-Attention Mr Savoie
I am concerned with the Transaparency of the CCSVI research process & indicate this in this email to The Society.

http://ccsviresearchtransparency.com/in ... topic=27.0

I am informed to watch the MSSociety web site for all updates re CCSVI research and on Dec 9, 2009 as promised they uploaded the complete process for applying for the CCSVI competition. Well done.

http://mssociety.ca/en/research/researc ... ms_rfa.htm

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After reviewing the competition guidlines I was shaken to see the amount of dollars being allocated by the Society for the most important research.

http://ccsviresearchtransparency.com/in ... topic=51.0

I found the amount trivial, its now being reported the Buffalo study will cost 5,000.000 dollars and donations are being accepted.

I had suggested that the 100,000c maximum should be waived with a (to be determined clause) once all the bids had been submitted than a truer understanding of the funding requirements would be made clear. Reasonable request! since there are no best past practice protocols available for CCSVI research. I also believe that the Society will be a Single Source of funding for thise research due to a lack of potential stake holders ie: pharmceutical companies.

My concern is that by establishing Maximum grant amounts it will limit the scope & quality of this CCSVI research.

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I had also pointed out to them that the Society's own guidlines specifically stated there were no Maximums to dollar amounts. They took this observation and went into there web site and changed item #17 of the faq and eliminated that clause.

Item #17 FAQ Dec 10, 2009

DO OPERATING GRANTS HAVE A MAXIMUM BUDGET/TIME PERIOD THAT CAN BE APPLIED FOR?

" No, there is no maximum budget. However, the reveiw committee generally approves a grant for $100,000 CDN per year. New grants are usually funded for a maximum of two years; renewals are considered for three years. "

NO, there is No Maximum Budget, yet it is being applied to this CCSVI research Competition?

Since there are no best practise protocols to review regarding CCSVI Research would it not be resonable to forgo the Grant amounts (within the ccsvi competition guidlines) and qualify it with a "to be determined" after all bids have been reviewd.


The next morning the Society addressed this observation of mine by changing there WEB Site

This morning I am reviewing the Guidlines, Today Dec 11,2009 item #17 reads

17 DO OPERATING GRANTS HAVE A MAXIMUM BUDGET/TIME PERIOD THAT CAN BE APPLIED FOR?

The reveiw committee generally approves a grant for $100,000 CDN per year. New grants are usually funded for a maximum of two years; renewals are considered for three years.

<shortened url>

So it seems my concerns were adressed by removing the words

'No there is no maximum budget'

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_________________________________________
Finally after waiting several days I emailed them for a response to my original emails this is what I received today.

From: Bill Larsh [mailto:llarshllarsh@cogeco.ca]
Sent: Tuesday, December 15, 2009 9:17 AM
To: Carley Smith
Cc: msessex@bellnet.ca; MS Grants

Subject: Still no response

Goodmorning,

Carley, Yves, Karen, just dropping a note to inquire as to the length of time it takes to receive a response from the Society. I have asked for clarification on the Society's position regarding CCSVI research. The following are emails I have sent & to date I have received from Carlèy ``will be in touch soon email`` If you could please expidite a response It would be appreciated.

______________________________________________________________From: MS Grants
Date: 15/12/2009 1:40:45 PM
To: Bill Larsh; Carley Smith

Subject: RE: Still no response


Dear Mr. Larsh,

At this time all information regarding the request for research operating grants on Chronic Cerebrospinal Venous Insufficiency in Relations to Multiple Sclerosis is available online and no further information will be provided at this time.



Regards,

Karen Lee

Karen Lee, Ph.D.

Assistant Vice-President, Research

Research & Programs Department

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I will end this thread by stating That Canada has the highest rate per capita of MS anywere in the world. The MS Society is OUR VOICE, they should be a reflection of those that suffer with this hideous disease.

I will not sit here and write that i understand the process of research, but i do know that you get what you pay for. The Society is making a statement that this 100,000c Grant will buy US (all the Canadians that suffer daily with this hideous disease) a comprehensive , no stone unturned scientific study re CCSVI that we as Canadians will be proud of and we lead the world in this most important endevour.

This research will be published in every scientific journal of importance in todays world and we did all for just $100,000c

All Canadians need to call, email the Societies and congratulate them on their vision of the future for all those they represent that SUFFER DAILY, Great JOB MS Canada.

"I sure hope they have not forgotten who they represent-- no what a silly thought"

PS. I am already saving up for this years donation to the MS Society. Can't Wait.

-keep the heat to the feet-
BB
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Postby reg613 » Tue Dec 15, 2009 2:05 pm

I don't see why this research has to even be done. It's a vascular issue and these are as old as the hills, with practitioners doing their thing every day and completely separate from MS neurologists.

I suggest people put away their wallets and simply go to a vascular surgeon to ask if he will take a look at jugulars.

Man, I hope all this "latest thing" isn't just some scam to get more money out of MS victims.

Charity and fund raising is a license to print money. No one knows where this money goes. This is a bad world. The first step is skepticism...
reg613
 

Postby bohemianbill » Tue Dec 15, 2009 3:47 pm

Reg, excellent point, there may be a physical abnormality that may correlate with MS. Your point is simple if there is blockages than they should be rectified no matter how you label it.

The research will prove or not prove that people afflicted with MS have these blockages and when those blockages are relieved (the liberation treatment: than the ms sysmptons presented should also be relieved.)

Dr Zambonis research has indicated along with other specialists such as Dr Haake, & Dr Dake that there are nuances of exciting testing that need to be tweeked ie; MRI & Doppler.

Research will take each nuance ,define it, extrapolate it, & find it either of the norm or not. That is the research that is needed. If CCSVI is the new paradgym than these studies need to be completed. Money needs to be spent to make these studies viable so that they are proven as fact or not.

Do i and my family stop raising money for MS research (and we have raised hundreds of thousands) the answer is No, But before we forward it we will be taking a new position, asking a lot more questions and demanding Total Tranparency no matter were this money may end up!

BB


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Last edited by bohemianbill on Tue Dec 15, 2009 3:56 pm, edited 1 time in total.
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Postby steve185 » Tue Dec 15, 2009 3:55 pm

My wife suffers from MS, we live in New Brunswick. Tomorrow, Dec 16th, we have an a/pointment to meet with our local member of Parliament. I would urge everyone who is effected by MS to do the same. We plan to ask him what the Government of Canada plans to do about this n ew treatment and to have it fast tracked. If people don't make this an issue nothing is going to get done.
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Postby bohemianbill » Tue Dec 15, 2009 4:14 pm

Thanks Steve and good Luck with your meeting , please update us, body language is everything, do you have the ear of the beurocrate or are we just filling in time with a constituent.

Go to the meeting informed. There is no better way to speak to authority than knowing you know more than they do (your subject matter). Lastly the only thing you hope to get out of all your time & effort is knowing that this person has been educated, he has a desire to learn more, and he with your assistance teach others.

CCSVI will happen only if the people of Canada & the World do Exactly what you are about to do. My wife of 30 plus years being afflicted with MS for twenty plus, progressive & in a chair. Thanks you for your efforts.

Steve lets hope & pray that your initative is just the beginning. it has to start somewere. let it be written it started with you & your family. God Bless , keep us informed.

BB

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