The Audacity of Hope

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

The Audacity of Hope

Postby rssugg » Fri Jul 02, 2010 6:16 am

The only folks that should be giving up hope at this point is the neurologist, not the patients.

The fact remains - neurologists are about as effective in treating MS as I am at flying under my own power. Neurologist do not know what causes the disease, they dont even know why or how the drugs they prescribe work. In fact, all drug companies start with the statement 'It is believed that the mode of action is....". A 32% efficacy rate in MS drugs across the board is more like a placebo when the multiple institutions have found ~90% of all MS patients have venous malformations. The other ~10% more than likely have intermittent venous malformations based on mechanical obtrusion (vertebrae, etc) or postural issues not evident when in position for a scan.
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Postby sbr487 » Fri Jul 02, 2010 6:59 am

Hey Rssug, do you think there is a possibility of doing something from home to raise money for CCSVI?
To give an example, here in India there is a non profit org called CRY (child relief and you). Their greeting cards are available in major stores. When you buy their card, most of the money goes for charity. Buyers donate. Creative people contribute by creating designs for greetings. Just begging for money will not help. Is there something that can be made and sold while still being at our homes?
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Postby rssugg » Fri Jul 02, 2010 7:17 am

^im sure if someone that has the time and energy to put to it (ie: folks that are unfortunately homebound or similar) then it may be a possibility to organize something like that.
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