When the MS society gives money for drug companies to research a new drug for MS and that drug is approved, shouldn't we get credit for that?

In other words, should PwMS, using a drug, get credit for the moneys NMSS put into that drug? Our cost should reflect that, IMHO.

Of course it could be quid pro quo and the drug Cos probably donate to NMSS, so they will favor the drug and then the FDA approves it. Like I say what a racket!!

The only med that has ever helped me with my MS sx is one that is not FDA approved for MS. But....I don't put much faith in anything the FDA backs.

Good point, Sally!

The NMSS funds a lot of Research, not sure they provide anything to Drug Companies. Once a drug is shown to be effective it is likely that it will be bought by an established Drug Company though. Even though the NMSS doesn't profit from the Drugs, the MS Population as a whole does benefit from better treatments. So, in a way they do get a 'profit' since their purpose is to make life with MS not as bad and to end MS.

You're tooooo kind, Bill.

Which is fine for the present, but I believe they're overly focused on THIS, which is the main problem.

Why are we focusing so heavily on treatments to make it 'not as bad'? I know people need help and relief now. Sadly though, as others have mentioned, the drugs that help us are ones off label in a lot of cases (mine included).

Not really a surprise that my medication that keeps my MS 'not as bad' was a personal discovery through reading online and first hand experience. Again, not drugs targeted for relief with MS symptoms and off label use with both.

I don't see them wanting to end MS. They may say this, but if anything, they are compassionate to wanting to end MS as far as the public image goes, and once behind closed doors, they're putting on their thinking caps for the next big pharma.

Why such denial when treatments such as diet, LDN, or CCSVI, to name a few, come into discussion? Why do our doctors fluff these results off at first point of contact? I know, I'm getting away a bit here from the MS society discussion, but it all ties in together if you ask me.

Personally? I don't donate direct to the MS society of Canada, but if a friend with MS is doing the MS walk I'll donate to them, even if the funds from the walk ultimately end up with MS society of Canada. Supporting those going out, doing the walk to bring MS into the highlight of news or the public, I'm all for it, even if I don't necessarily agree with where the money ends up.

(sorry, rant!)