This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi,

Can someone explain something to me? I will use a strata council as a comparitive. Keeping it very simple.. (like CCSVI ).. MS donations are for MS research and the care of MS patients.. the MS society are the keepers of these funds.. but the funds belong to people with MS.. so.. kind of like a strata council/ strata owners/ strata fees.. if the strata owners are not happy with the council there are ways to force changes.. is this not the case with the MS society? If not already, should we all become MSS members? and in doing so we would have a real voice?
I'm going to look into this as the BC/Yukon AGM is coming up May 15.

I wrote a post on this earlier, but we may try to get the American Heart Association involved. Silly to depend on only neuros, when ccsvi will have to be a collaborative effort in the future between neuros and vascular docs.

ikulo
Great idea to approach an organization with a vascular focus! Such a sensible idea. Perhaps we should focus on trying to shift our requests for support and assistance to such an orgainization, and try to shift donations and funding to such an organization.

okay.. sent off my membership application.. awaiting response... http://www.mssociety.ca/en/involved/member.htm

ikulo.. excellent idea .. CNIB might be a good idea too...
We could do this while continuing to influence how current MSS funds are allocated...

PCakes, ask to make a presentation to the Board of Directors, the folks at the MS Society who make decisions on how donated money will be spent.

Even if you specify that your donations to the MS Society should be used for CCSVI research, they are still dividing the donations up in the same way as outlined in that article. So while 100% of YOUR donation will be donated to CCSVI research, they must take the $$ that would have come out of yours and get it all from someone else's in order to balance out how the funds are distributed. So it really doesn't change anything when you tell the MS Society to put yours towards CCSVI research, it only means that less of someone else's donation goes to research and instead, goes to the rest of the activities that your donation didn't cover.

PCakes, the recipients of the donations don't have a say in how it's spent or where the funds go, it's up to the Board of Directors of the MS Society to decide within the structure of the MS Society mandate, how to divy up funds. MSer's have no rights, nor does the MS Society work "for us" like a strata council works on behalf of their members.

I say we need to make a presentation to the MS Society to persuade them to put more money towards CCSVI. And work to get an MSer on the Board of Directors to advocate from the "inside".

Hi Eric.. I think we are saying the same thing.. in different ways.. I completely agree and this is why I have applied for membership.. with membership comes a vote... !

PCakes: So what is the benefit of membership? And where does the 'vote' come in?

I see the society says on the link you provided to "have a say in the future of the society'

Does this mean that members have input? So you are saying that by joining the society it may give members more sway in how they distribute funds?
It's a great idea in theory, but how would we know this is the case?

I really love the presentation idea....oh that's good. If everyone mailed and petitioned the society to spit out the million or so dollars for ccsvi research do you think they would listen?

To be truthful, I'm skeptical to become an official member because I wouldn't want them to spend the extra money communicating with me or sending me mail/books/brochures because that would take away from research funds. Isn't that how it seems to work!

I also love the vascular organization support idea.....which organizations would fall under this category?

So many great minds in one place.....wish our community ran the society, we'd all be fixed up by now

morning missy,

Members can vote at the Annual General Meetings.. this is when and how the board members are selected...

As a member, what benefits do you receive?
Access to all programs and services offered by Client Services, including:

-Voting privileges at the Annual General Meeting

link to upcoming BC/Yukon AGM newsletter
http://www.mssociety.ca/bc/PDF/news/Spring_2010.pdf