This Is MS Multiple Sclerosis Knowledge & Support Community

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I appreciate the threads re: private money being donated to various Canadian Studies, each proporting a minumum of 500,000 for each study.

I just do not understand why we are letting the Societies off so easy, these people are academics, (I will even speculate at the national level those that work there have never been touched by MS directly)

They are bogged down by small mindedness, they are unable to think outside of there box, everything is orientated to the dollar, the survival of the Society. The survival of there fifedoms.

A research grant for a lousy 100,000 /year for 2 years -this is there response to CCSVI research. That my friends is a joke, a slap in the face to all that suffer and support MS in this country. The Society by its own mandate/mission statement exsists for one reason only-to Eliminate MS.

Holidays are coming to an end, family business has been taking care of. Now is the time to WAKE up the Society to the wish's of the People.

They have OUR MONEY, money that is walked for, biked for, its money that when condolances are made the grieving family invariably askes that you donate it to the Society. Corporate sponsorships (Rona) great supporter. Yet they see fit to extend a lousy 200,000 over 2 years & that takes 6 months to put through the pipeline.

Its time to start a campaign of education for MS CANADA, The Society needs to understand that we the People will no longer support RESEARCH
(do not mix up the local chapters with the National their work is imperative in supporting the grass roots afflicted) They have helped my wife & I personally with some equipment.

Email, phone, boycott fundraising, talk to the local chapter so they can communicate with the National of your disconcern. Obtain & document your medical professionals opinion on CCSVI. Call, write, email your government elected, educate them on CCSVI research and request spending of tax payers dollars be directed towards the CCSVI research.

The Society needs to understand that this research is going to happen.
MSers are either going to support MS Canada because they Support us OR we will take the necessary steps to educate those in our community that the Society is No Longer our voice and funds should be redirected to those research programs supporting CCSVI.

By putting the heat on the Society we will obtain the necessary press to educate the masses regarding CCSVI research the last thing the MS Society wants is BAD PRESS.

Could you imagine people showing up at the next MS WALK with picket signs! Can you imagine the reaction from Rona if people in wheel chairs start picketing in front of there stores re MS Canadas minimal support of CCSVI.

The Society must learn this is a real probability if they do not change there attitude towards CCSVI.

It takes 30 minutes of your time, emails , a letter , a few phone calls.

I as always will cut/paste my my TIMS post and send them to MS CANADA, if they reply I will update you.

If you agree please add to this thread your efforts & responses. We need to HEARD! The Society reads TIMS do not let me be a lone voice. ACT, share your ideas to help get our message accross!

-keep the heat to the feet-

BB

PS

this board is read by people afflicted by MS from around the world, Canada is said to have one of the highest per capita affliction rates.
You would Expect Canada to lead the fight in this CCSVI Research and as a Canadian I expect nothing less. Help us motivate MS Canada! please send them your personal thoughts regarding the importance of CCSVI for all of us. MS has no Boundaries and either should CCSVI research.

From: bill
Date: 31/12/2009 7:59:05 AM
To: info@mssociety.ca
Cc: msgrants@mssociety.ca; msessex@bellnet.ca
Subject: CCSVI RESEARCH, we did the Society to take the LEAD in CCSVI RESEARCH!


Dear Society, hope all had a Happy Holiday! Now its time to get to business. Please read my latest post to TIMS. I communicate with like minded people who share my concern over the lack of Meaningful involvement with CCSVI research support in Canada.

Its our contention that the MS Canada Society must show stronger support, specifically by increasing your Grant distributions from 100,000 per year to 250,000 per year for a min. Of 2 years.

This is a total of 500,000 for meaningful support to CCSVI research. We expect MS Canada to announce this very good news within the next 30days. Having doing so would allow us to continue to support MS Canada.

WE that support or those that suffer from MS in this Country and the world need to know that CCSVI research is being taken seriously by ALL. Show Us the support.



``It is our mission to be a leader in finding a cure for multiple sclerosis and enabling people affected by MS to enhance their quality of life``


Thank you
Bill & Laurie


From: Karen Lee
Date: 31/12/2009 7:59:16 AM
To: bill larsh
Subject: Out of Office AutoReply: CCSVI RESEARCH, we did the Society to take the LEAD in CCSVI RESEARCH!


Our offices will be closed from December 24th, 2009 - January 4th, 2010. I am out of the office from December 23, 2009 - January 4, 2010. I will be checking emails periodically during this time

bohemianbill wrote:...MS Canada Society must show stronger support, specifically by increasing your Grant distributions from 100,000 per year to 250,000 per year for a min. Of 2 years.

Bill, my first thought was "you are letting them off easy." But then I remember corporate budgets. They said something about current research projects not losing funding, which is important. So their commitment must be from some kind of contingency fund. As a business person. I can understand that.

What I would also like to see (apart from lots more money, obviously) would be for them to state they can commit X dollars now and will immediately put CCSVI as a fundraising/budgeting priority going forward.

In addition, they have doctors on their Board -- why aren't these guys in Italy or Poland looking over the shoulder of someone actually doing CCSVI treatment or talking to patients? This isn't research, this is information gathering about what the Society will prioritize.

My doctor said the Society gets a lot of pharma support and will drag its feet until there is overwhelming research confirmation.

Maybe it comes down to who they listen to, us (the walkers) or their corporate donors?

When the MS society of Canada closes it's time on recieving proposals for research grants, I better have heard that they are supporting MCMaster and UBC. I would hope that those universities applied to the MS Society for funding. If they didn't it would be interesting to know why not. I will probe the MS society later to see who they are funding.

time for a new society??

I don't know what to think. I know they have done good for the MS community, but they say they want to be the leaders in finding the cure. I don't look at them as being the leaders here. Too much politics goes into those societies. I don't know how else they would operate though. I know there has to be guide lines. There are very impressive treatments that we have seen around the world. Why aren't we fast tracking this and jumping all over it. By the time some of these studies get any money, they might have phase 1 results complete.

Please consider this . The CCSVI story has only just begun. It will take time to evolve. One year ago , getting any funding from any MS society was a dream . What has been offered is a great start.

As hard as it is , we must remain respectfully calm , as it unfolds.

It is well worth the effort to research how CCSVI has been debated and discussed here at TIMS.

I am concerned that the efforts of the CCSVI pioneers are being washed away and replaced by a more militant group.

Protests , Pickets , angry letters was not the method of choice used by those that have advanced the Big Idea.

It looks like 2010 is going to be exciting for CCSVI .





Mr. Success

I know Mr. success sorry I was just venting some frustration

I would love to help you in any way to get the MS Society of Canada to get behind this research 100% not half heartedly - I definitely agree that these "Corporation Charities" need to take the wishes of the people that raise the money seriously - this is a bright light of hope for people who have MS and the sooner the research can move forward to actual treatment for people in Canada the better - I mean our government definitely spends money on stupid things and that is why we have these societies who are supposed to look out for the interests of those afflicted not spend so much on silly things like address labels and the other silly things I have received from the MS Society in the past - I admit I no longer donate to any "Corporation Charities" only direct to ppl who I know have probs like MS, Lupus, Cancer - the only charity I support whole heartedly any more is the War Amps who spend VERY little of their donations on admistration related stuff.

Complacency or Contentment
http://en.wikipedia.org/wiki/Complacency

meaning "happiness, joy or contentment", and chelko (root Chet-Lamed-Kuf) meaning "portion, lot, or piece", and combined mean contentment with one’s lot in life

Mr Success stated
"AS hard as it is, we Must remain respectfully Calm, as it unfolds"

Mr Success where is this written, are these your words, is this your Opinion? There is a certain Complacency regarding CCSVI research that permeates on this site.

The Haves are taking the bull by the horn, they are doing their research, travelling, having procedures completed and educating many.

The Have Nots are being held up by Complacency, this attitude of do not rock the boat, let every thing take its course.

Do I believe that a proper coordinated triple blind study needs to be completed re CCSVI-Absolutely-

Do I believe that MS Canada would have initiated there Token MS Grant proposal if had not been for CTV-W5 -Absolutely NOT-

My post suggests certain Actions that The Have Nots can participate directly in, not everyone can jump on a plane to Poland or Italy. The road blocks are already being erected Dr. Daackes personally has commeneted this will not happen in any meaniful way unless the People demand it.

Anybody wondering why CBS has not run this story yet, and if you think it will be, think again. It won't be the first story stuck back in the can. Stories like this get told when the people give them no choice!

Action, call to arms, letters, emails, phone calls, day in and day out is the only way that CCSVI Research has any type of chance within a reasonable time frame.

In the meantime you may decide to sit on your complacent butt, But do not disregard my democratic right to protest, picket and send angry letters to those that will stone wall the Big Idea. Or anyone else that decides to be Active in this fight.

I for the life of me cannnot fathom on how sending MS Canada our concerns of the little amount of funding being directed at CCSVI research can be considered militant. If you believe that 100,000/year is a richteous amount for CCSVI research than reply on this board to such. What is your concern that MS Canada might cancel your news letter?

Total Transparency nothing less, increase the grant budget for sound CCSVI research, completed in a coordinated timely manner. Why can we not direct the people that Work For Us to ensure these things happen.

Confused husband of a progressive wheel chair bound lady for the last 20 years.

-keep the heat to the feet-

BB

received this response this morning, will update

From: info
Date: 04/01/2010 9:55:32 AM
To: bill
Subject: RE: CCSVI RESEARCH, we did the Society to take the LEAD in CCSVI RESEARCH!


Thank you for your email. This is just a quick note to confirm that your email has been forwarded to the appropriate person, and you should receive a more detailed response from them shortly.

Thank you for supporting the work of the MS Society of Canada

Celine Weeling Lee| Receptionist

_______________________________________________________________________
MS Society of Canada | 175 Bloor Street East | Suite 700, North Tower | Toronto, ON M4W 3R8
p: 416-922-6065 or 1-866-922-6065 ext. 0 | f: 416-922-7538 | e: celineweeling.lee@mssociety.ca | w: www.mssociety.ca

If you do different searches on google you will find links to the provincial
heads of MS Society and Canadian head. If you just reply to the main "contact us " thread on the MS Society websight you'll just get "Miss Jones the secretary" . Do different searches on Google and you'll find different figure heads.

we canadian are too polite. I think we have every write to be angry. I got an stock letter from Yves Savoie resident and chief executive officer
President, Ontario Division. Tell me to wait and be paitent.

He's not my doctor... hell he is not a doctor. I'm glad though that he has told doctors that we need to be patient. Its nice of him to stay so clam and rational as my brain continues to cause non reversable damage

I'm not saying the the Society doesn't have it place. But YVES SAVOIE and the society as whole has forgot that they are supossed to be OUR VOICE. He is not to speak and decide for us.

My response is that I am not donating any more time or money to the Canadian MS society. Lets see them be paitent with us when money stops coming in. Lets give our money and time to universities working on this other other issues we like. Until there is change.

Sorry my first post is a rant..

forzajuve

Forzajuve , welcome to TIMS. CCSVI has been quite the hot topic in the MS world. Reading all of the sticky's are worth your while.

It is amazing how far CCSVI has advanced in only one year .

Yves Savoie and the MS Societies are not the bad guy's in the MS fight.

In 12 months or less , we will have so much more information at hand. There are multiple CCSVI research studies underway. When these people eventually gather together and compare notes ... ...then the ball should really start to roll.

I think this is worth repeating. All the letters , phone calls , or whatever will have very little effect on advancing CCSVI . What will advance the CCSVI idea and treatment , is DOCTOR to DOCTOR exchange of information. The medical professionals obtain their information from respected journals .....and conventions they attend. NOT from Internet web sites.

Reading the CCSVI story here is incredible . Doctor inspiring Doctor .

We all want everthing done yesterday and more money - lot's more money - invested in CCSVI .....PDQ.

I get a good feeling about this Big Idea .....I hope you do also.




Mr. Success

I have had 5 close family members who have been diagnosed with MS (brother, aunt, uncle, 2 second cousins). None will gain from the CCSVI studies that will start soon - but future generations will have more answers, if/when MS recurs in our family.

I believe that the most important thing that every family member and friend of someone with MS can do right now is send a donation (small or large) to the McMaster &/or UBC CCSVI research funds.

A large number of donations is a powerful thing on many fronts. First, it indicates what MS related people want. Secondly, it may make official bodies think that they are losing control over their funding base - and therefore they will have to adjust priorities. Finally, as solid data is produced by the studies (that cannot be delayed if we fund them), then the governments and societies will have to shift priorities.

Private donations can also be leveraged by requests that governments and other parties match funds provided by the grass roots.

The most important activity here is to get the funds (bit by bit) to McMaster and UBC to get the studies started this spring! The fact of having studies in Canada will automatically increase awareness, information and pressure on the whole system (government, medical practitioners, societies, individuals etc) to recognise the CCSVI potential for Canadian MS patients. Information on protocols for individuals to get the tests they want will be available on www.ms-mri.com.

McMaster Donation information:
1. http://givetomcmaster.ca Donation Designation Category: “Other”; Designation for this gift: “Other”; then Special Instructions “MS research in the MR Imaging Research Centre”
2. Or mail cheque written to McMaster University, c/o Terry Milson, Faculty of Engineering, McMaster University,1280 Main St. W., Hamilton, ON L8S 4L7, with instructions to donate to the “MS research in the MR Imaging Research Centre”

Don't get mad - take an empowering action! Write a cheque to register your vote - and this will get attention!