Funding your own research
I started a thread on the parkinson's disease forum about funding. I noticed many people with uncurable diseases always blame the big pharmaceutical companies. But when I looked deeper into the matter, I came to the conclusion that patients with uncurbale diseases are the ones that have most blame these disease are still uncurable.
Let me explain this based on the numbers I know from the Parkinson's disease community. In the US there are more than 1 million people suffering from Parkinson. The biggest Parkinson's foundation is the MJFF foundation. From 2001 until 2009 they invested 140 million $ into PD research. I was a bit shocked about this number. 140 million $ in 9 years isn't that much. If every PD patient in the US would only invest 50 $ a month into the foundation, they would donate 600 million $ on 1 year to invest in PD research. This is 3 times more than the MJFF has invested in PD research over 9 years !!!! And this is when you do the maths only counting people from the US. In Europe there are also more than 1 million people with PD. So this amount could easily get doubled.
I brought this point up and Debi from the MJFF foundation told this was indeed a problem. Only 6 % of all donations done to the MJFF foundation are coming from people with PD, or people that are friends or relatives of someone with PD. And she also told that in median people only donate 50 $ a year. And she also told that the lack of money is holding PD research up. This is crazy. How do PD patients aspect to get cured if they don't even invest in theor own research. They have no right to blame the big pharmaceuticals. As I see it, they are the first ones to blame. If you are not willing to invest for your own cure, then how can you expect someone else to do this for you ?
Now let's extend this to the ALS community. ALS is far more devastating than any other neurologic disease. And percentage-wise there aren't that many people with ALS compared to people with Alzheimer or Parkinson. So ALS research is even worse sponsored. I didn't look up the figures but I can imagine that majority of people with ALS also don't fund ALS research.
With this message I want to encourage everyone with ALS and their relatives to fund ALS research in some way. I am not saying this for myself. I try to convince you because I read about the disease and it is really horrible and I think a cure should be found for all of you. And I realize this can only be done if all ALS patients work together to beat their disease. I would advise you to fund ALS research, monthly with a minimum of 50 $ a month; or maybe even more as your community is smaller ... whenever you decide to donate, ask yourself "How much money am I prepare to spend to cure my disease ?". Aks your friends and relatives to fund ALS research. Start a foundation and raise money for ALS research. Go in the streets, shopping malls and ask people to fund ALS. Visit all neurologists in your country and ask them to tell all ALS patients they have to invest money in ALS research. ... There are so many things you can do yourself to make the difference.
And most importantly ... even if the cure comes too late for many of you ... at least you speeded up the quest to find a cure and when you are not here anymore, you still beated the disease and avoided other people (maybe even your relatives) to suffer from the same as you did.