When foundations raise money for research how is it decided where it goes. Do people like Nancy raise money for a certain research and Montel another, is it like an election where you support a certain canadate because you belive he or she is on the right path. So does say the MRF have it's own fundraising camp. They are in need of some money so are there people out there that go to work raising funds only for the MRF. Does all the money raised world wide go into a big pot and recearchers have to apply for some. The MSS gives u a pie chart of how the money raised is distributed and the biggest chunk is to research, but what research is it? Does every foundation or society have different ideas of where the money should go?
I know my posts are usually negative and worthless but this one is just truly wanting to understand better how this works. You always read of money, money needed , money raised. I know this is a complex question but is there an answer that will help. We give to the Cities Walk for MS every year and it would be great to know what research i am supporting..
The core idea of organizing non-governmental help for MS people was good, first creators in every country were people with strong personal motivation (usually having a family member with MS). 50 years ago it was a right move aimed to bring more attention to this disease.
The situation with non-governmental funds/trusts/foundations is different now. Do your research and count them, you will be amazed of the number. I’ve seen some major ones at work and I’ve changed my opinion from very positive to opposite, let’s admit - with great personal sadness.
The slogan used is still the same – help for MS, it is unbeatable, and it prevents any criticism, keeps it at bay by default. Are you crazy; are you against helping MS people? Even if you say - of course not, your reputation will be damaged anyway.
I’ve mentioned several times about rising commercialization in current medicine and science, the same valid for NGO on MS nowadays.
If you want have a good living, travel for free, stay in good hotels for free, be honored by community, be known worldwide, increase your self-respect – start your own NGO.
Of course it will be not your major source of income, you have some already (poor people don’t start NGO!), but having nice live full of events for free - it is exiting.
To keep NGO running you need to attract: members with annual fee (countries), charity from people, charity from corporations, charity/donations from Big Pharma. Expect that money from Big Pharma will be your biggest source of income - why spend millions on advertising when it goes more effectively directly to your target consumer through respectable organization?
NGO on MS have no labs, no hospitals, nothing, but they come up with money and they hire persons to perform this and that, mostly for additional prove of effectiveness of current drugs (follow the money!); no one NGO works on ‘pure’ science. (Think about consequences of this practice, what it does with research.)
After several years, from start of your own NGO, you will realize that you have a very nice mechanism running. Flow of money in is stable and increasing (thanks to competition on the drugs market), and you have a great alternative to playing golf all the time. Even if you still playing golf, your partners will admire you – this guy is great, he makes a big deal for fighting MS.
For little guy it is great to get some attention from such NGO, like you get your luxury vacation for free, without feeling guilty for lavishing spending around, because you help to “fight ‘ MS.
No one NGO has paid directly to person with MS for his drugs (compensate the cost, sometimes unbearable), house improvement (adaptation for disables), and whatever he/she needs first. There is no hand-in-hand help; there is big deal around ‘fighting’ MS in larger scale.
Of course, not all people who are on Board of NGO are bad, not at all, and I think that majority of them truly believe that they really help and accept all indirect income and benefits as a natural compensation for their efforts (the question is – what kind of efforts?). More, most of them are nice, intelligent, educated in something, and they see nothing wrong in what they are doing, because that the way as it suppose to go, all NGOs made by the same model.
I think that NGO is a great western world invention how to make more money using tax-free money (think about labs, pharma and others) and it goes round.
Please don’t consider that I am totally against NGOs, of course not, they have some positive features. The reason why they became more controversial lays in increased distortions in nowadays world.