This Is MS Multiple Sclerosis Community: Knowledge & Support

[frodo]

I was thinking, is there anybody strong as a pharma and that will get benefit from this? For sure the insurance companies. They are paying millions each year to pharma companies.

Maybe any marketing action should be addressed to them. If they find this CCSVI likely to be the cause of MS maybe they will even contribute to the research!!!

[bestadmom]

Frodo,

I like your line of thought.

I wish I was a professional fundraiser and knew how to navigate to pull in some money. But then again, what worries me is that there needs to be funds dedicated to ccsvi research. Unless donors gve directly to specific researchers, how will they know where their $$ goes?

[cah]

Fundraising is not "rocket surgery". Everyone who can speak and write can learn that. Just convince people and associations to give their money. It's just a great, great deal of work. No, even greater. But there's no magic to it.

[thisisalex]

just an idea:
What about asking money from ultrasound maker companies?
They could develop a special ultrasound machine which has special program to detect abnormal venous flows
it would be a great business for them considering that ultrasonic deivces are quite obsolote in the US compared to europe

I was thinking, is there anybody strong as a pharma and that will get benefit from this? For sure the insurance companies. They are paying millions each year to pharma companies.

Maybe any marketing action should be addressed to them. If they find this CCSVI likely to be the cause of MS maybe they will even contribute to the research!!!

[frodo]

Just to put everything together, an idea from someone else, copied from the thread http://www.thisisms.com/ftopict-8994.html. What about google ad-sense?

http://ezinearticles.com/?Google-AdSens ... id=2234002

[cah]

The fundamental (haha) problem is that nobody of us is in the position to request for money cause no one is a representative of an association, society or something like that. So the first step would be to found one, dedicated to promote and push CCSVI.

It really makes a lot of sense. This association could use the money for funding studies, but also to pay professional PR, make information documents, take out ad(words) and so on. There are thousands of people who support CCSVI mentally, think a lot of them would do this financially, too.

[frodo]

The fundamental (haha) problem is that nobody of us is in the position to request for money cause no one is a representative of an association, society or something like that. So the first step would be to found one, dedicated to promote and push CCSVI.

It really makes a lot of sense. This association could use the money for funding studies, but also to pay professional PR, make information documents, take out ad(words) and so on. There are thousands of people who support CCSVI mentally, think a lot of them would do this financially, too.

A big problem for that is that people is spread around the world. Founding and housekeeping of an association probably involves a lot of paper work. When everybody is in the same country the work can be distributed. If each person is in a different country is impossible to handle all the burocracy.

[CNClear]

I know some of you know but I don't know who all saw my post about this: one of the world’s biggest pharma companies (one of the ones that make stents and, as it happens, has a huge stake in an MS drug) has shown interest in possibly, funding a CCSVI foundation. They want to talk to me after the first of the year, which is a good thing since I am going to Stanford TOMORROW (I just realized the time has finally arrived!).

Once I have the first appointment set, I'll have a better idea of how to proceed with them...I will be asking for some help from Cheer, as she is so eloquent, well versed in the subject and passionate about it...I haven't approached her yet, I am going to wait until I come back from having the procedure with Dake (which is scheduled for Dec. 9th) and from what I hear I'm not going to feel so good for a couple of weeks...

I work as a consultant for this pharma company, they heard about CCSVI and learned that I was going to have the procedure, and so, they approached me, with the idea of funding a foundation and we have had a few ‘offline’ conversations. They know I will need a little time to catch back up on my current work, as I’m taking a month off, and can’t let this interfere with the job I am under contract with them to do and they are interested in my outcome, of course. I do have a company ID and have signed non-disclosure & confidentiality agreements, so I am reluctant to directly say who they are, I just can’t confirm or deny at this point, but hopefully, 2010 will be bringing good news!

So, wish us all luck and say some prayers that this works out for the best for everybody. ‘See’ y’all when I get back after the 11th….

Lisa aka, CNClear

[Algis]

Great Lisa! Have a nice trip and wish you well

[TFau]

That sounds amazing, Lisa!

I wish you the best for your trip!

[ozarkcanoer]

This is great news, Lisa. People shouldn't jump to conclusions about big pharma. I am really glad you are posting this information.

[Out2l8]

I'm wishing you a fast, safe and successful trip Lisa!!! Your determination and bravery is very encouraging to all of us MSers. You rock Girl!!

The effort you're going to make in getting to a specific foundation started that is dedicated to CCSVI is fantastic!!! BUT - please take your time and heal from your procedure first! You hear me?

We'll see you on the other side. Please, please, please keep us up to speed!

Travel safe and all the best Lisa!! Prayers have been deployed!

[sbr487]

CCSVI - Go for the jugular!

YES!!!! how hysterical...

The flow must go on ...

Let the flow begin ...

[bestadmom]

I love "The flow must go on".

Good thing we still have our sense of humor.

[Ruthless67]

Lisa,

I Look forward to your update.

Lora