I can respect the fact that they are entitled to their opinion; we all are. But what I can't understand is the irresponsibility of their editorial.
A responsible newspaper would have offered alternatives to funding paralysis research on a state by state basis.
A responsible newspaper would have also talked about the costs associated to not curing paralysis.
A responsible newspaper would have talked about the money that has come in to California because California WAS financially supporting a cure for paralysis.
But these are not the words of responsible journalism. They are the words of a newspaper who on one hand empathizes with the need for a cure, but then condemns the fact that money is being spent on it AND more importantly offers no alternative. This is exactly why I use the word enemy of paralysis cure.
Oddly enough, I don't disagree that this is not the best way to fund medical research. The best way would be for a national or even international fund and leadership to cure paralysis. This way we would get the most bang for our buck and be able to use the best scientists wherever they live or do their research. I've said it before and I'll say it again; a Manhattan or Apollo project like scheme would soon see a cure for paralysis.
The problem is that this is not something on the horizon at the moment so we are stuck looking for alternatives and that means looking for money at a much more local level.
How I wish this editorial would have talked about a national strategy to cure paralysis rather than bemoaning the fact that Californians who break traffic laws will be asked for a dollar. An important paper like the LA Times could have an impact on a national strategy, but instead decided that Californians are not their brothers' keepers.
Here is a letter to the editor submitted by one of our Cure Captains in the Liberation War to Cure Paralysis.
We are not asking Californians to foot this bill alone, just to help the other states that already are doing it. My home state of New York is as are several others. The Spinal Cord Injury community is small in comparison to say breast cancer. Funds are desperately needed, how many of your tax dollars are already being spent on making building accessible, or going to long term health care coverage for the folks that are injured? Would you be as quick to say no if it was one of your loved ones? Do me a favor please visit Project Walk in Carlsbad, talk to those people about the daily hell they live in. Not one person in a chair wants to be in it. I have a 21 year old son that was injured and has no function from the chest down, he can no longer use his hands, go the toilet by himself. He was going to graduate last May and go onto graduate school. That is now a memory unless a cure is found. 12,000 Americans suffer this injury every year, the next one could be someone you know or love or even be you. Californians, please support this law.
I'm not so quick to denounce the editorial. We all know how funds raised for good causes usually don't find their way to worthwhile projects. I am not a supporter of if we throw enough money around, hopefully some will end up in a good lab.
ReplyDeleteThe problem is not the funding, it's finding the right place to give it to.
You're dead right and i wouldn't support this if i didn't think the funds were going to the right place. I don't have the link handy, but if you search "Roman Reed financial reports" you'll probably get it. From where i sit, most ofthe funding is going to chronics and every cent is accounted for. I think you'll be truly impressed by honest and open reporting.
ReplyDeleteDennis
Dennis, thanks for the information. I believe Roman Reed will make good choices. It meant a lot that you understand not only are funds important, but we should make sure they are given to labs that are innovative. But, also, lets not fall for the notion we should support it just because its for chronics.
ReplyDeleteThat's why it's also imperative to have a good quality scientific advisory board. They can review projects and help the community to fund only the really worthwhile projects. To also keep everyone on track, I like what U2FP did when they formed an Advocate Research Committee. Not only is the science reviewed, but the community has a voice and keeps projects from wasting money. This is the first sci org that gives the community a seat at the table. GO U2FP!!!!!!!!!!! KNOCK EM DEAD!!!!!!
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