Re: anticoagulants
When I had my veniplasty at Stanford, I was put on Plavix and and a baby aspirin for two months and then nothing. When they were doing stents, the people who had them were on coumadin (and maybe Plavix, too) plus a baby aspirin for two or three months. After their next check-up if all looked well (I think this means the stent had been incorporated into the vein), they then only had to take a baby aspirin for the rest of their lives. I have not looked at these discussions for a long time and don't think I will find them again easily, but I think it had something to do with the difference between veins and arteries.
That said, it's still early and I don't think anyone knows for sure what the best long-term protocol is.
sho
The following percentages were what I found on the Canadian MS Society website but I will see if I can get actual dollars tomorrow:
31% Client Services
25% Research
12% Administration
12% Education/Awareness
8% Chapter and Volunteer Support and Development
5% Indirect Fundraising
5% Government and Community relations
2% MS Clinics
I don 't know about you but seems to me that more of the 12% that goes to Administration should be alloted to MS Clinics at the very least. After all, the clinics are supposed to help "Us" and without "Us" there would be no need for "Administration" right?
I am anxious to see the numbers in relation to the numbers from the US NMSS...I believe they are audited numbers according to their website.
Well it's good to see I can still stir it up around here...as I said before I will try to get the $$'s from the Canadian NMSS...guess it will be Monday now but I will try not to forget...if I do, please someone remind me ok?
Hugs,
Rena
ah, she was just in the mercury this week and looks as though she is just starting a blog about it. here is the link if anyone wants to follow:
http://www.reformedms.org/blogs/julie-goodwin
wow! i live in guelph ontario and was fascinated to read the article. i'll have to look out for julie, i haven't seen anything about her in the local papers yet, but i wonder if i've missed something.
if i hear of anything further i'll keep you posted.
as for the numbers, i have never been in touch with the m.s. society but i'll see if i'm able to dig up some figures.
michelle
Yes, those ratings are dismal. You can read the whole system of what is evaluated on charitynavigator.org
This is a very well regarded group and I use them to separate what groups I will support with my donations. I work to hard for my $$ to just use it to support someone else's paycheck.
As for the stent - the drugs are the evil side of these life-saving heart procedures. DH and my father will be on plavix for a long time, thanks to the stents that opened their arteries. The same would undoubtedly have to be true for the CCSVI stents. A clot is a clot, regardless of where it forms.
There is talk in the CCSVI groups about the follow-on care these patients need when they return home after their treatment. I sure wish the research could fast forward and tell us how this all fits into the bigger picture.
Best, Lu
Typically you have to stay anti-coagulated. Stents just like grafts and valves are "platelet grabbers," and perfect place for thrombus formation. Once the mass is big enough, its headed for the superior vena cava and then a pulmonary embolus. Cerebral outflow is a nasty place to get a clot. Last I heard, heparin was PTT two time out and for Coumadin, they try to keep the PT/INR 2 to 3 times out. I think one of the issues is the if you go on antibiotics with Coumadin, the PT/INR needs to be checked frequently since it can drift. One of the big comments I've seen, is that CCSVI is trading one medical management problem for another. Just because you have the surgery, you may or may not have improvement, but you will be on anti-coagulants. I think most of the people are staying on their DMDs, since there is no long term research to support going off them.
Is this similar to what you have heard Quix?
Bob
Any idea what the criteria for the ratings are?
Maybe I am being naive or maybe just a dunderhead, but where is the money going to research, aid, and such? Does that fall under "Program Expenses"?
I am concerned at the whole "breaking with ranks" terminology. Surely the "higher-up" don't see their positions as doctrines or their philosophy as ideology. This isn't a para-military organization.
I always saw their position - anyone's position - on CCSVI as being an opinion - albeit an educated one. Why can't someone in the administrative position have an opinion and then follow it?
I have a question for any of you who are following the CCSVI situation. Somewhere late at night I was reading comments from people who had had the procedure or who "knew" someone who had had the procedure and they had ahd stents placed. And someone here has a stent in place in a different spot for a different probblem.
So my question is: If you have a stent do you then have to stay on anticoagulants - ie. coumadin? Is it just for a period post-op for ongoing?
There would reaise concerns for me because the biggest cause of medical-care-related death in this country is anticoagulation. Too much, too little - it is a nightmare.
Lulu - those are dismal rankings.
Quix, the unhappy
They also have a link that shows similar charities - here are the ratings for the other big MS groups in the states -
National Multiple Sclerosis Society - NY overall rating 51.26 3 stars
Multiple Sclerosis Foundation - FL overall rating 39.13 1 star
Nancy Davis Foundation for Multiple Sclerosis - CA overall rating 12.30 0 Stars
Multiple Sclerosis Association of America - NJ overall rating 45.55 2 stars
Accelerated Cure Project for Multiple Sclerosis - MA over all rating 57.60 3 stars
Thanks for posting that, Rena. I read that article earlier this week and wondered then about all of our Canadian members and their feelings.
Are the books of the Canadian MS society open to anyone to look at? If so, why don't you spend some time looking at the numbers and let us know how it looks. Here in the US we have several places to learn more about these groups. For an overview we can go to charitynavigator.org
here is what they say about the US NMSS-
Revenue
Primary Revenue $107,213,144
Other Revenue $2,168,197
Total Revenue $109,381,341
Expenses
Program Expenses $88,356,805
Administrative Expenses $8,232,496
Fundraising Expenses $8,622,769
Total Functional Expenses $105,212,070
Payments to Affiliates $9,566,997
Excess (or Deficit) for the year $-5,397,726
Net Assets $ 12,937,388
and they also tell us that
"Joyce Nelson President, CEO (The person identified as holding the highest position of management, and therefore who would normally be responsible for carrying out the mission of the charity and leading the organization on a day-to-day basis.) earns $445,115 " and have rated them 3 out of 4 stars.
thought you might like to see some of our numbers.
be well, Lulu