Ottawa Will Fund Clinical Trials: Media

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

Ottawa Will Fund Clinical Trials: Media

Postby Blaze » Wed Jun 29, 2011 12:35 pm

According to the CBC, CTV and Globe and Mail, Canada's Health Minister has just announced the federal government will fund clinical trials in Canada. I don't have details, but here are links to the stories:

http://www.cbc.ca/news/politics/story/2 ... aq-ms.html

http://www.ctv.ca/CTVNews/Health/201106 ... py-110629/

http://www.theglobeandmail.com/news/pol ... le2080401/
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Postby ErikaSlovakia » Wed Jun 29, 2011 12:49 pm

Great news!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby PCakes » Wed Jun 29, 2011 1:03 pm

Thanks Blaze!

'WARNING' The Globe article could be detrimental to your endothelial health! 8O
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Postby cheerleader » Wed Jun 29, 2011 1:09 pm

Here is the health minister's statement--
NOTE that the clinical trials are being funded due to the current results of the ongoing trials of correlation of CCSVI and MS----

OTTAWA, ONTARIO--(June 29, 2011) - The Honourable Leona Aglukkaq, Minister of Health, today issued the following statement:

This morning I was briefed by Dr. Alain Beaudet, President of the Canadian Institutes of Health Research (CIHR), who chaired a meeting yesterday with the Scientific Expert Working Group on Chronic Cerebrospinal Venous Insufficiency (CCSVI) and Multiple Sclerosis (MS).

Patients and their families have been calling for the funding of a clinical trial on a treatment to unblock veins. Our government has been clear that we are prepared to fund a clinical trial, but only when there was sufficient medical and scientific information to support it proceeding safely.

At yesterday's meeting, experts discussed the seven ongoing studies looking at CCSVI and linkages to MS, and reviewed scientific reports that are presently available. Based on this information, Dr. Beaudet has advised me that there is unanimous agreement that a clinical trial should proceed at the Phase I/II level.

I have asked CIHR to establish the terms of reference for this clinical trial. We are committed to launching an open and transparent call for applications as quickly as possible. We have some of the world's best MS and vascular researchers in this country, so I'm confident they will put forward excellent proposals.

I want to thank the Scientific Working Group on CCSVI and the MS Society of Canada for their dedication and hard work. Our Government appreciates all they have done to grapple with this important issue.

It has been a moving experience to meet with and hear from so many MS patients and their families who have shown tremendous courage in the face of such a difficult illness. I wholeheartedly applaud those affected and their families who have to go through such difficult moments.

I have always said that I would do everything I can to accelerate progress in this area, and I believe today's announcement is another example of our government's commitment to keep working tirelessly in the fight against MS.


It appears there is enough evidence to go forward....good work and congrats to our Canadian friends.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby MrSuccess » Wed Jun 29, 2011 1:14 pm

okay ... I'll say it ... Good job Ringleader .... see what you started ?


Salute



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Postby Blaze » Wed Jun 29, 2011 1:29 pm

Interesting that same CIHR group which last year unanimously opposed clinical trials now unanimously agrees to proceed. They cite the seven trials underway, but to the best of my knowledge, most of those studies have not yet begun or are in the very early fledgling stages.

For whatever reason, they're finally recognizing us. Together we are making a difference!

Canadians Rock!! With many thanks to our southern neighbors and our global friends.

Dr. McDonald is ready to go. I hope the very first grant goes to him--SOON!
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Postby Ernst » Wed Jun 29, 2011 2:14 pm

Wonderful news, Im very happy and emotional at this moment. I quess this is huge step to right direction. Absolutely wonderful!!!
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby bruce123 » Wed Jun 29, 2011 2:54 pm

Blaze wrote:Interesting that same CIHR group which last year unanimously opposed clinical trials now unanimously agrees to proceed. They cite the seven trials underway, but to the best of my knowledge, most of those studies have not yet begun or are in the very early fledgling stages.

For whatever reason, they're finally recognizing us. Together we are making a difference!

I watched the anouncment and it seems clear to me that this "unanimous" 180 degree turn is not based on the 7 studies that are not yet even close to completion. There is something going on, I don't know what. Maybe it's just public pressure from people like us. Whatever it is... I'll take it.

Bruce.
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Postby MrSuccess » Wed Jun 29, 2011 3:27 pm

Bruce , perhaps the recent MS Society meeting with Dr. Hubbard paid dividends ?



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Postby Blaze » Wed Jun 29, 2011 3:38 pm

Bruce and Mr. S, you're both right. Probably both our public pressure and Dr. Hubbard's presentation made the difference. Plus, Dr. Duncan's announcement of a private member's bill just two days ago was also likely a factor. Maybe even declining donations to MSS played a role.

I just watched the Health Minister interviewed by Evan Solomon on Power and Politics. She was very cagey about who, what, when, etc. She wouldn't even commit to an amount of the funding.

Dr. Duncan and NDP Libby Davies were all over her lack of detail. They stressed how important it is to move quickly. Dr. Duncan also said Canadians should not have had to fight this valiant fight for resesearch and treatment while also fighting a valiant fight against MS.

Whatever the cause of this sudden and dramatic turnaround, I think the tide is turning in our favor.

Now, wouldn't it be nice if someone would make a sudden announcement that we can actually proceed to treatment. Well, I can dream, anyway!
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Postby PointsNorth » Wed Jun 29, 2011 4:16 pm

bruce123 wrote:
Blaze wrote:Interesting that same CIHR group which last year unanimously opposed clinical trials now unanimously agrees to proceed. They cite the seven trials underway, but to the best of my knowledge, most of those studies have not yet begun or are in the very early fledgling stages.

For whatever reason, they're finally recognizing us. Together we are making a difference!

I watched the anouncment and it seems clear to me that this "unanimous" 180 degree turn is not based on the 7 studies that are not yet even close to completion. There is something going on, I don't know what. Maybe it's just public pressure from people like us. Whatever it is... I'll take it.

Bruce.


I'm with you, Bruce.

I wonder what flicked the switch? A unanimous decision at the CIHR? As long as MS Society neurologists don't control research agenda . . . Let's see who they doll out money to . . . gawd I'm getting cynical.
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Postby Blaze » Wed Jun 29, 2011 4:32 pm

PointsNorth wrote:
gawd I'm getting cynical.


Aren't we all?!? Only because we have plenty of reason!
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Postby cheerleader » Wed Jun 29, 2011 5:06 pm

I have heard rumblings that the mid-point returns from studies (to be announced later this summer) were showing correlation between CCSVI and MS, and that the Buffalo angioplasty study was showing strong correlation and symptom relief. There's really no other reason for them to do this right now. Read this statement one more time....

At yesterday's meeting, experts discussed the seven ongoing studies looking at CCSVI and linkages to MS, and reviewed scientific reports that are presently available. Based on this information , Dr. Beaudet has advised me that there is unanimous agreement that a clinical trial should proceed at the Phase I/II level.


I want to publically congratulate all the hard-working volunteers and advocates in Canada for their time and energy. Many of these pwMS could have been treated and gotten on with their lives...but they refused to leave their brothers and sisters on the field, and went to work-organizing protests, writing letters, raising funds, speaking to lawyers and politicians. They did this.... Steve Garvie, Diana Price, Tim Donovan are three such people. There are thousands more.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Blaze » Wed Jun 29, 2011 6:26 pm

A musician opened our New Hope for MS event in London Ontario yesterday with the song We're Going To Try To Change The World Today. She closed with I Hope You Dance.

Her voice has been playing in my mind over and over since today's announcement. Together, we are changing the world!

I Hope We Dance!
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Postby Jugular » Wed Jun 29, 2011 6:27 pm

The MS Society of Canada is promising to post the mid-point reports of the Seven Studies on its website.

The CIHR meeting highlights indicate that the seven funded studies are progressing well.  As of July 1, 2011, the studies will be at their halfway point, concluding in July 2012.  One year interim progress reports will be available in the coming weeks and will be posted on mssociety.ca and ccsvi.ca.


While trying to restrain myself, and with all necessary caveats and precautions, I really do feel that this whole thing has just crossed over a critical threshold into mainstream medicine.

Dare we dream?
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