NMSS CCSVI Grant Awards to Be Announced This Afternoon

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

NMSS CCSVI Grant Awards to Be Announced This Afternoon

Postby marcstck » Fri Jun 11, 2010 11:40 am

Just received a note from one of my NMSS contacts that they will be announcing CCSVI grant awards this afternoon at 4:30 PM EST.

Contrary to the rumors that have been flying around, there is no $100,000 cap on the grants being awarded. That figure applies to the Canadian MS society only...
Last edited by marcstck on Fri Jun 11, 2010 12:39 pm, edited 1 time in total.
User avatar
marcstck
Family Elder
 
Posts: 560
Joined: Tue Jan 03, 2006 4:00 pm

Advertisement

Postby cheerleader » Fri Jun 11, 2010 11:52 am

Yup....less than 2 hours. Tic Toc----

http://mssociety.ca/en/default.htm
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5015
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby JCB » Fri Jun 11, 2010 12:56 pm

So... in about 40 minutes I'll be one of the three:
1.) really pissed
2.) still waiting on current lists
3.) jumping (okay I can't jump anymore) for joy because they are going to start enrolling patients with PPMS in the US.

Can't wait
User avatar
JCB
Family Elder
 
Posts: 141
Joined: Wed Apr 21, 2010 3:00 pm

Postby cheerleader » Fri Jun 11, 2010 1:38 pm

$2.4 million for 7 research projects-
US and Canada combined.
Details here--
http://mssociety.ca/en/releases/nr_20100611.htm
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5015
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby mshusband » Fri Jun 11, 2010 1:42 pm

It's a step forward. Testing not treating though ...

How many people are going to be willing to wait years for treatment?
User avatar
mshusband
Family Elder
 
Posts: 249
Joined: Sun Jan 24, 2010 4:00 pm
Location: Pittsburgh, PA, USA

Postby euphoniaa » Fri Jun 11, 2010 1:46 pm

Seven different studies determining the "prevalence" of CCSVI.

The work of the researchers in these initial studies will not involve surgical treatment, but rather the investigation and determination of CCSVI’s prevalence in different circumstances.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
User avatar
euphoniaa
Family Elder
 
Posts: 681
Joined: Sat Jul 15, 2006 3:00 pm
Location: midwest U.S.

Postby Vivianne766 » Fri Jun 11, 2010 1:48 pm

Not me!
User avatar
Vivianne766
Family Elder
 
Posts: 164
Joined: Sun Mar 07, 2010 4:00 pm

Postby ikulo » Fri Jun 11, 2010 1:51 pm

This is phenomenal. If these studies confirm the MS/CCSVI relationship the floodgates will open.

The good news is that screening for CCSVI will not take that long to complete, so we should have these results fairly quickly.
User avatar
ikulo
Family Elder
 
Posts: 444
Joined: Tue Aug 04, 2009 3:00 pm
Location: colorado

Postby JCB » Fri Jun 11, 2010 2:00 pm

Progress but still pissed, still on the waiting list.

Two years!

When I think how far my disability has gone in two years. What does two more years look like? I 'm frustrated today.
User avatar
JCB
Family Elder
 
Posts: 141
Joined: Wed Apr 21, 2010 3:00 pm

Postby Hopeful10 » Fri Jun 11, 2010 2:02 pm

I'm am afraid that these studies are going to be farces like the German study.

First, nearly all of these studies are led solely by neurologists. Instead, they should at the very least have radiologists or vascular surgeons either leading or being co-leaders of the study.

Second, the quotes from many of these neurologists suggest that they're hoping to disprove the theory of an Italian researcher. For some reason they don't mention the published BNAC study (or even the ongoing Georgetown study). The quotes from the Canadian researchers seem more even-handed than the quotes from the American researchers.

Third, the doppler ultrasound requires sufficient training and experience to properly evaluate for CCSVI, and researchers who want to disprove CCSVI will not take the time or spend the money to ensure the necessary training for their sonographers.
User avatar
Hopeful10
Getting to Know You...
 
Posts: 16
Joined: Thu Jan 14, 2010 4:00 pm

Postby Trish317 » Fri Jun 11, 2010 2:05 pm

Canada has only committed $700,000.00 and they have four of the seven projects. Is the 2.4 million going to be equally distributed among the seven projects?
User avatar
Trish317
Family Elder
 
Posts: 357
Joined: Sat Sep 06, 2008 3:00 pm
Location: Rhode Island

Postby cheerleader » Fri Jun 11, 2010 2:13 pm

I am underwhelmed. I am frustrated to see that every one of the seven studies is seeking to "redo" Dr. Zamboni's scanning --in an attempt to prove or disprove his discovery of CCSVI in people with MS. Two years is a long time for MS patients to wait while new doctors clarify something that Dr. Haacke, Dr. Dake, Dr. McDonald, Dr. Simka and Dr. Sinan and others are already seeing in 90-100% of pwMS. I am also frustrated to see that two of the US grants go to neurologists--Dr. Fox and Dr. Wolinsky--these gentlemen are brain specialists who do not utilize doppler technology or magnetic resonance venography technology in their daily practices. I would hope that at the very least they will be partnering with vascular doctors and doppler technicians in order to proceed with their studies. Dr. Zamboni's protocol is very specific- and the instruments and technology needed to test venous return are not something that can be mastered overnight. In looking at the grant recipient list--I can only think of Dr. McDonald's quote---we need plumbers looking at MS patients' veins, not electricians. I see too many electricians on this list.

On the plus side--it is good to see money committed to furthering studies for children with MS--a group that is often overlooked in research. I remain optimistic, and believe the best of our US and Canadian MS Societies. I am gratified to see that the voices and requests of patients for further studies into the venous connection to MS has been heard. The monetary response is not as robust as we had hoped, but the dialogue continues.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5015
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby Hopeful10 » Fri Jun 11, 2010 2:14 pm

Trish317 wrote:Canada has only committed $700,000.00 and they have four of the seven projects. Is the 2.4 million going to be equally distributed among the seven projects?


No. If you click on the "details" link for each study, you'll find that the four Canadian studies are receiving a total of C$700,000 over two years combined, while the rest of the funding is going to the three American studies.
User avatar
Hopeful10
Getting to Know You...
 
Posts: 16
Joined: Thu Jan 14, 2010 4:00 pm

Postby Trish317 » Fri Jun 11, 2010 2:25 pm

Hopeful10 wrote:
Trish317 wrote:Canada has only committed $700,000.00 and they have four of the seven projects. Is the 2.4 million going to be equally distributed among the seven projects?


No. If you click on the "details" link for each study, you'll find that the four Canadian studies are receiving a total of C$700,000 over two years combined, while the rest of the funding is going to the three American studies.


Like Cheer said, I'm underwhelmed, and it seems that Canadians have a right to be outraged.
User avatar
Trish317
Family Elder
 
Posts: 357
Joined: Sat Sep 06, 2008 3:00 pm
Location: Rhode Island

Hmmmpppphhhh

Postby Gordon » Fri Jun 11, 2010 2:34 pm

Waste of Money and time.

All this work has been done.

They are idiots and remain so. UNDERWHELMED does not even begin to state how typical this is of the MS society.

G
User avatar
Gordon
Family Elder
 
Posts: 296
Joined: Wed Jan 06, 2010 4:00 pm

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: Robnl