NMSS CCSVI Grant Awards to Be Announced This Afternoon

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

Postby Cece » Sat Jun 12, 2010 9:40 am

Looking over the studies I think that even though they seem slanted toward disproving rather than proving CCSVI, they will still render some useful information:

Dr. Carlos Torres, The Ottawa Hospital, University of Ottawa, Ontario: employing powerful MRI technology to explore vein anatomy and assessing for iron deposits in the brains of people with MS and in age-matched healthy volunteers. These studies work towards mapping out normal variations in brain vein anatomy and providing insight into CCSVI in MS. Fact sheet


This one uses catheter venography, "the gold standard." This is good.

Dr. Carlos Torres, The Ottawa Hospital, University of Ottawa, Ontario: employing powerful MRI technology to explore vein anatomy and assessing for iron deposits in the brains of people with MS and in age-matched healthy volunteers. These studies work towards mapping out normal variations in brain vein anatomy and providing insight into CCSVI in MS.

This one is aimed at disproving CCSVI by showing that there are normal variations in vein anatomy in everyone.
Dr. Robert Fox Cleveland Clinic, Cleveland: studying people with MS or who are at risk for MS (CIS) and comparison groups including healthy volunteers and people with brain atrophy (shrinkage) from Alzheimer’s disease. This team is using the ultrasound techniques originally used by Dr. Zamboni, as well as magnetic resonance studies of the veins (MR venography), MRI scans of the brain, and clinical measures to determine MS activity and atrophy. They are also examining neck and spinal cord tissue from MS patients at autopsy to provide a tissue-based evaluation of CCSVI and its possible relationship to MS.

This one looks at cadavers. There may be information to be gleaned there and it is looking directly at the real structures, not just images of them. This one is good.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby pegmegrund » Sat Jun 12, 2010 9:55 am

belsadie wrote:If anyone knows how to contribute to Dr. S or any of the now up and treating centers. please let us know.


I don't know how to support Dr. S... but maybe info will be available soon.

I started a page on my blog gathering a list of links where we can donate our money. Click here.

By donating to Haacke, you indirectly support treatment, as he is helping in the analysis of tests with groups like The Hubbard Foundation...

While BNAC is currenlty doing the testing study, they have a treatment study planned.
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Postby Ruthless67 » Sat Jun 12, 2010 4:27 pm

cheerleader wrote:And not to put too fine a point on it...but it appears in the US the grants were given to society insiders.

Dr. Jerry Wolinski--chair of the NMMS 2010 Clinical Advisory Board

Dr. Robert Fox--Advisory Committee on Fellowships for the NMMS

Dr. Aaron Field-- 2010 NMMS recipient Nervous System and Repair Team

Wow--they really went outside the box looking for researchers in the US.


We need this information in large type on USA Today, The Wall Street Journal, etc.; as well as the Canadian equivalent. All individuals with MS should be made aware that there is consorted effort by their MS Societies to withhold information as well as to contain and nullify it.

What was it I heard the President quoted as saying recently, something to the effect that, "Information was a distraction".

I say, "Information is liberation"!

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Postby NoTime2W8t » Sun Jun 13, 2010 11:46 am

I wonder if Neurologists know that they themselves are supporting stents. With every action they produce in slowing this process, they send a handful more MS patients overseas to find treatments, where most provide stents. How many people can (or want to) afford the costs of travelling these distance multiple times to ensure their stenosis' don't re-close.

But in the end, instead of treating patients in their own backyards where they can monitor standards etc...they instead place us in a position of not only not being able to pay for it privately, but we have to leave the country to have the procedure. Egos and $$ are in the way, not science.

Having said this, I DO believe that the standards in other countries such as Poland are up to standards, however this is the first argument you would get from any Neurologist speaking out to a patient considering such a thing.

After all, I will be in Poland in 6 months or so being Liberated. Barring a few Liberation supporting Neurologists, I hold all others responsible for the needless loss to all MS patients in the coming years.

I am not going to tell any of you what you should do as every one of you have spent your lives being told what you need to do by your doctors, Neoros, your families, and by all means your own bodies. I just hope for each of you that you can find what works for you and that the options in front of us continue to grow. That is what I will be fighting for.

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Postby SandyK » Mon Jun 14, 2010 2:56 pm

After the announcement of the awards, I had sent an email voicing my concerns about all the neurologist having the lead. Here is the response I received today.

Thank-you for reporting your concerns about our new CCSVI grants. The grants list the lead investigator for each trial, but the teams are made up of experts from several fields, including: experts in vascular imaging, MRI and ultrasound, neurovascular imagery and neuroradiology, cerebral vascular and interventional imaging. The trials will be investigating, in part, the best methods for testing for the presence of CCSVI, so you are completely correct that the teams will include specialists outside of neurology in order to do this testing. Our frequently asked questions section will explain this further and more information can be found in the details for each study:

FAQs About New CCSVI Grants : National MS Society
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Postby Cece » Mon Jun 14, 2010 3:03 pm

pegmegrund wrote:
belsadie wrote:If anyone knows how to contribute to Dr. S or any of the now up and treating centers. please let us know.


I don't know how to support Dr. S... but maybe info will be available soon.

drsclafani wrote:
JCB wrote:What a guy, I don't know who has more devoted fans than Dr. S. Does anyone have any ideas on what we could do for him to show our appreciation for his efforts? If you do PM me, I will try to get something going.


no one is cured yet. mostly we have a lot of answers

save your ideas and remember that money will be needed for a randomized trial to prove this and make the TREATMENT undeniable to insurers and neurologists

we have just started the journey my friends

Here is a quote frm his thread from yesterday...do you think he means a randomized trial that he will eventually be doing? I would contribute to this.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby bestadmom » Mon Jun 14, 2010 3:11 pm

Dr. Sclafani does not have a fund set up for CCSVI research. When he does, you'll be able to make direct donations thru ccsvi.org. The ccsvi.org site will link to US studies so you can donate directly to their funds, too.
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Postby ozarkcanoer » Mon Jun 14, 2010 4:15 pm

bestadmom,

That's a great idea to provide links to US studies so we can make donations. I just want to brag a little bit about the $3000.00 (plus probably about $500.00 more) that my sister-in-law and I raised yesterday at our MStery party picnic for BNAC. Ashton Embry will match $1000.00 so that makes the total about $4500.00 !!! There is always something positive we can do !

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Postby bestadmom » Mon Jun 14, 2010 4:45 pm

OC,

Your party did good!! I saw your post on facebook. Your are ver fortunate to be surrounded by good family and friends. Next, opened veins and no more headaches.

BAM
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Postby MrSuccess » Tue Jun 15, 2010 10:59 pm

okay ... I have been waiting for the dust to settle before commenting.

As they said they would .....the MS Society has stepped up and provided funding for multiple CCSVI investigations . 2.7 million ? Right ?

I'll admit .... they thinned the soup a bit more than I would have liked .

I am pleased to see the MS Society has asked the Gov't of Canada for additional funding - 10 million $$$$$ - to join in the CCSVI investigations.

Let us hope they are successful in their request for the 10 million. :!: :!:

I have read the opening posts . :roll: Some say ...it's not enough ...some say ...the wrong people have gotten the funding .... and on and on.....

Worst of all.... some say .... there are no vascular experts involved. :twisted: This has been proven wrong .... there are quite an interesting mix of medical investigators involved.

Final thought . It seems to me to be a good idea to provide funding to those who are not convinced of CCSVI - MS linkage.

Why fund those that already are CCSVI believers ? Those investigators know it's value. They just want the green light to openly help those suffering .


Sadly ... certain people like ... Dr. Freeman need to see things first hand before they believe something . I guess we all are like that also. :wink:


Bring it on ....





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