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Dear all

I recently heard a story about the Dr who invented viagra - he was in fact looking for a drug to help some other problem and came across this unusual side effect. The phamas paid big money for this, but when he asked if he could continue his reserach on the original problem, they refused to fund it.

Well that makes me very cynical. But I have an idea.

Some very rich people regularly give millions to charity. If we could contact one - Warren Buffett, Bill Gates, etc - and make a proposal for a cure project that is a not for profit organisation, reserachers could potentially make real progress.

What are your thoughts? Does anyone know how to contact such people??

Between us we must be able to do SOMETHING!!

J.

J,

HIV is a classic example of what can happen if you get the right financial support for finding better treatments. The TV adverts in the 1980s were all about death and pictures of gravestones. Now, in the west, it's not a death sentence and there are good treatments available. I still think MS is considered a rare disease by many - although the prevalence is perhaps as hign as 1:600. What we need, without being cruel, is a top celebrity to come down with this disease and this would create a head of steam and provide better funding etc. I still find it frustrating that research is funded by grannies shaking tins outside supermarkets, or people doing walks and cycle rides. Only the big drugs companies can afford to undertake trials - not the MS Societies - and they will always develop drugs to be taken over a lifetime. Granted they have come up with a vaccine for cervical cancer, but given that all young women will be given this in the future - it's another cash cow.

J K Rowling's mother died of MS at 45 and the author has made some contributions to research in Scotand (where she is from). But she is worth some £500 million. Would she really miss £100m ($180m)? Her legacy is already guaranteed with Harry Potter, but a more impressive legacy would be to fund the research leading to the major breakthroughs! Without the involvement of drugs companies.

Ian

I remember a couple years ago M, J, Fox was all over the news with his parkinsons and he raised all this money. They swore up and down that a cure was around the corner in fact they knew how but just needed the money.

Where is he now, it doesn't matter who you are!!

I think this has potential - let's not be put off by past failures. Any research organisation is going to state that they are close - how else would they get funding? They need objective management.

I will put my thinking hat on. J K Rowling is a great thought Ian - she has cleary an incentive as you stated.

We would need someone overseeing this who is not connected to some big pharmaceutical company. Ian, how about your links with Dr G and Prof Scolding - any thoughts there?


I don't want to be here in 10 years time reading the same stories. We have to ensure MS research gets the right type of funding and maybe it will pave the way.

Any ideas/thoughts etc please post or pm me.

Thanks

J.

Yes and no.

If it were simple as simple as throwing money at it, I promise you there would be a cure by now. It's not just about money. It is very complicated. More complicated than throwing money at getting Sadam out of Iraq, and that hasn't worked out so well either.

Point - Yes, It would likely help to have someone with more exposure than Montel, more than Michael J. Fox. Laura Bush, Jennifer Lopez or Bill Gates himself would enhance exposure greatly if their immune systems started attacking their brains. But, cure, I don't know. IMHO, the cure is going to arrive by accident. As noted above this is how Viagra came to be. Copaxone and Novantrone too. I am glad that MS gets a piggyback effect. AIDS, Cancer and Spinal Cord research provides benefit to the MS effort.

Being a scientist is not easy and there is a lot of beauracracy in the profession, just like the beauracracy of being a neuro. This work is not as easy as everyone wants to think it is. napay

Napay,

If it were simple as simple as throwing money at it, I promise you there would be a cure by now. It's not just about money. It is very complicated.

I couldn't agree more. This disease is really complicated - several genes involved, an environmental factor (a pathogen yet to be identified). The environmental factor (probably an infectious agent) which is caught at a particular time in someones life. Timelags between getting infected and symptoms of MS. Hormonal issues - woman get in twice as much as men. Possible protective role of Vit D.

From my contact with researchers in the UK I feel that progress is being made. I was told recently that the genetics issues have almost been sorted out. Work continues on identifying the infectious agent etc.

As I have said before, technology is leading to new discoveries. And treatments will also allow the researchers to understand more about the cause / cascade of events.

And a cure won't be in a single form. Treament to stop disease activity / progression, treatment to repair damage, treatment to prevent people getting MS in the first place (e.g. vaccinations against the infectious agent). And I think discoveries relating to cancer, and other neurological disease will have read across.

Ian