North America CCSVI Scociety

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

North America CCSVI Scociety

Postby Renoandi » Sun Jan 10, 2010 10:46 pm

This is an idea that one of the members of my vlog and who has his own channel came up with. I feel very strongly about this and hope that you will too. Please watch the video and pass this on to anyone you think can help our cause.

http://www.youtube.com/watch?v=LcPCXQugj1Q

The first step in getting legal represenatation to represent us.
The founding of a PHYSICAL; LEGAL entity called the North American CCSVI Society.
The creation of an executive board of physicians, nurses, lawyers, cardiovascular surgeons, neurologist (only a sincere dedicated neuro, radiologists, surgeons, part-time clerical staff.
The establishment of home offices in the U.S. and Canada with constant sharing of information and concise plan of attack for raising CCSVI awareness, equipment, training, funding clinical trials, overseeing clinical trials. Raising funds for MRV, doppler, and cooperation with universities that will be involved in the research.
The NACCSVI Society would also prevent people from opening up opportunistic clinics that would do unsafe procedures in an attempt to make a quick buck.
The framework will involve first legal representation and then the formation of an executive board. The next step the physical procurement of offices and staffing and then fundraising toward CCSVI research.
We can do this.
Anyone who would like to volunteer ideas, time, services, legal expertise may feel free to contact me at
irishbear76@yahoo.com
www.youtube.com/MSVlogSupport<br />LIJ 60%/ RIJ 50%, angio on Sept 14th no signs of improvement yet.
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Postby muse » Sun Jan 10, 2010 11:30 pm

That’s just an awesome idea Renoandi! I saw the videos of you and your friends last night (twitter message by cheer) and I was very, very moved! Keep going girl and perhaps at the end we can do some worldwide stuff together!
All the best
Arne aka muse
http://www.csvi-ms.net/en
http://www.facebook.com/pages/Venose-Mu ... 7471578700

Here the awesome vids of Renoandi & friends:

http://www.youtube.com/watch?v=AA-yWl9QBKk
http://www.youtube.com/watch?v=pJAup7usKLY
http://www.youtube.com/watch?v=NcRr-KfKQLc
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Postby Renoandi » Mon Jan 11, 2010 12:03 am

Thank you so much Muse, I do belong to your group on Facebook and have looked read your other site as well!
www.youtube.com/MSVlogSupport<br />LIJ 60%/ RIJ 50%, angio on Sept 14th no signs of improvement yet.
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Postby Mechanicallyinclined » Mon Jan 11, 2010 12:04 am

Not that the idea to support something like this is bad. Something like this is realistically a huge undertaking , with the emphasis on huge. Something like this has so start on a smaller basis and grow in to what we want it to be. Where would all the money come for for facilities and the people you would have to pay. I'm not discounting the idea but you have to think of it starting on realistic levels.
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Postby jr5646 » Mon Jan 11, 2010 12:13 am

Great Idea.... I nominate Cheerleader for Exec. Director :D

I searched TIMS for nonprofit and found the below post (amazing what you can find here, btw) Anyway, if "notasperfectasyou" is still around maybe he can help out or point you in the right direction...

Sign me up for a donation ! I'll make my tax deductable check out to NACCSVIS

notasperfectasyou wrote:I hate to admit it, but I know something about getting a nonprofit organization started - a lot more than I know about MS, unfortunately.

The IRS is the entity that grants NPO status and they have, as you would expect an IRS-like process that is not simple. Here's some links to the IRS info about being a non-profit organization. I will answer any and all questions as best as I can. Some of the info above is not exactly acurate - Like trying to understand MS, understanding how to get tax exempt status is complicated and hard to understand. napay

Form 1023 Instructions
Pub 557
Pub 4220
Pub 4221
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Postby Renoandi » Mon Jan 11, 2010 12:18 am

We realize what a huge undertaking this is, that is why we are looking for a lawyer to help advise how to go about this and make it legit.

This will take time and evenutally money. The current studies being done are small and will take just as much time with little benefit for the average MS patient.

If we can get qualified people to help us and become part of the board, we may be able to make this available to more people and not have to go through neurologists.

We won't know unless we try. If we find it is too much then we move on to the next phase. We have nothing to loose and so much to gain if we can get this accomplished.
www.youtube.com/MSVlogSupport<br />LIJ 60%/ RIJ 50%, angio on Sept 14th no signs of improvement yet.
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Postby Renoandi » Mon Jan 11, 2010 12:24 am

Thanks JR. I did find a website that offers a lot of information about this as well.

I was also checking on how to become a Citzen Lobbist, lots of reading to do and my brain is not as fast as it use to be.

Grass roots efforts for the lobbying seems to be the best way since it costs to have a professional one.
www.youtube.com/MSVlogSupport<br />LIJ 60%/ RIJ 50%, angio on Sept 14th no signs of improvement yet.
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Postby muse » Mon Jan 11, 2010 12:30 am

Don't worry Mechanicallyinclined I'm not going crazy, not now!! I'm just treaming of a better world since a very long time, that's all.;)
Best
muse

http://www.csvi-ms.net
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Postby bestadmom » Mon Jan 11, 2010 6:33 am

This is in the works under a different name and has been for several months. It is a huge undertaking and will unfold as the research begins to confirm CCSVI.

Urls are registered, attorneys are lined up, accountants are being consulted with. We do not want to fall into the pattern of so many other associations where the overhead eats up all of the revenue and there is nothing left.

Stay tuned.
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Postby cah » Mon Jan 11, 2010 9:49 am

It might be a huge undertaking, but it has to start just somewhere. Mind that ALL the MS societies in the world started with one single ad placed by a women whit a brother having MS...

I tought about something like this in my country, and had the idea to prevent taking influence by money for all times. This could be done if donations can only be made to an account in trust from a notary or lawyer, and be handled over to the society anonymously. What do you think about that?
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby bestadmom » Mon Jan 11, 2010 10:00 am

Cah,

Your proposal to set up a fund through an accountant or attorney can not work in the US.

First we must have not for profit status granted by the governmant and a complete budget must be set up in addition to a mission statement, a board of directors, registration with Guidestar and other non profit registries in order to legitimize the group and allow other entities to pay us, like Facebook and Paypal.

I am a treasurer and executive board member of a small non profit and it is expensive to set up a non profit in the US. The biggest expense if finding an accountant who will do the work for a reasonable fee. They charge around $35,000 so we need someone who will do it for free. We already have a group of lawyers who will work for free for a non profit.
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Postby cah » Mon Jan 11, 2010 11:14 am

Gosh... in germany, all you have to pay is about $ 150 for the registrations and notary - and the drinks of the first meeting of the founding members (you need seven). My lawyer wouldn't take more than about $ 1000 for writing the ordinance (and he's not the cheapest), but you can do it on your own, too.

Don't know if my idea of funding through an attorney would work here, though.
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Why wait?

Postby frodo » Mon Jan 11, 2010 11:35 am

bestadmom wrote:This is in the works under a different name and has been for several months. It is a huge undertaking and will unfold as the research begins to confirm CCSVI.

Urls are registered, attorneys are lined up, accountants are being consulted with. We do not want to fall into the pattern of so many other associations where the overhead eats up all of the revenue and there is nothing left.

Stay tuned.


Why to wait?

After all CCSVI is a different condition. Maybe it will turn out to be the cause of MS or maybe it won't, but it has been shown that CCSVI exists, and at least in this forum all the tested people was affected, and all of them report improvements in health after treatment.

CCSVI should be cured regardless of its relationship with MS. From my point of view we shouldn't wait for longer studies showing that is related to MS. There are enough reasons to cure it now.
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Postby bestadmom » Mon Jan 11, 2010 11:48 am

It is very important to have a plan and a mission that can be executed. It is being formulated. We are in the infancy stage and have to grow organically. These things take time to nurture.
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Postby Vonna » Mon Jan 11, 2010 1:02 pm

I am frustrated that we have to wait on the research as well. CCSVI is a real condition. If we have reason to suspect we have it, we should get tested for it. MS or not! I would think insurance companies would love to pay for this test and surgery. It would save them boat loads of money in the long run! We should consider that insurance companies need to hear about this. They could turn out to be our advocate and help us get the word out. We need people getting trained to do the tests and surgeries.

They say it will take a couple years to confirm Zamboni's findings. Meanwhile, our brains are getting damaged and some to the point it can't be fixed! Is this not irresponsible?

Picture 2.5 million people (the estimated MS population) in a large metal prison. There are small fires (disabilities) here and there. People are not dying, just being burned at various levels. Some are escaping the fire pretty good, but the heat is still more than they can bear. And the smoke inhalation is bad too. The longer these people are in the fire, the more burns they get. They are losing their hands, feet, eyes, ears, voice, dignity, resources, etc... Little by little.

There are tons of doors around the entire building, but no one knows how to unlock them.

They are given drops of water now and then, to ease the suffering. (Medications).

Finally, one day, someone makes a key that fits the lock!!! A tiny door is opened, and people begin to crawl through one at a time, to safety.

But then the door is slammed shut! You see, the prison keeper must make sure that all the prisoners are safe. And the prison guards, those that compassionately give the water everyday, it's their job to keep the prisoners safe too. They shout, "We must be sure that everyone in the prison will be able to get out by using this key. Until we have proven this, we must not make more keys or let anyone else out! Further, we must prove that crawling through the door will be safe! We care so much about our prisoners, and want what is best for them."

Meanwhile, the fires still burn, continuing to take the quality of life from the prisoners.

How does the story end? Do the prisoners decide that the guards have always had their best interest at heart, and they can be trusted. Or do the prisoners began to talk to the guards one at a time, slowly convincing them to learn how to make a key like the original.

I recognize the need for proper protocol. But really, if you have backflow blood in the brain and microhemorrhaging, shouldn't this be taken care of immediately? If stents are not proven safe, the balloon could at least hold us over until the stent research is completed.
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