Fine. First we get blamed for being sick, then we get blamed for not being able to raise the money to support our own research. The truth is that many of these suggestions were made long ago, in the main fundraising thread.
I don't see much we can do, when we don't have any control over the project website or the donation process. Sure we could set up our own website, but it's the official one that counts. There are lots of great suggestions in the article I quoted earlier, none of which we can implement.
Well, that makes over 2000 assholes, because they haven't donated, right? Or maybe it's because 60% were on mobiles. That leaves 1200 being able to donate, of which 3/4 might have done so. Not bad, IMO.
It's time to forget the idealist nonsense and accept how human nature works. Those of us who are sick are prepared to go through hell to donate. For regular people, if it can't be done in 2 minutes on a mobile device, forget it. They're already onto something else.
Given that it's a patient led crowdfunding attempt, yeah, I'd say it's got to be at least in part down to the patients, no? It's not about whether it's fair or not. We all know it isn't fair. But like you say, lets not be idealist about it. Reality is that until a breakthrough is made to legitimize the disease, we are pretty much on our own.
If people really wanted to have helped they could have easily got in contact with those running the campaign ages ago and got involved directly. The Contact page on the website clearly makes this a very easy option. Or even indirectly people could have helped in a variety of ways, some of which are suggested on the site itself under How to Help, or in other ways with a bit of thought.
Ultimately it does boil down to how much the patient community wants it, and although getting across the message about how this research might translate into on the ground changes for patients could have been better, there has been a fair amount of exposure with articles and so on on sites with very big reach, which have had many thousands of views (I'd guess 10-50k), and
even if you don't understand entirely, it's clear from a half-hearted attempt to understand, that we're talking about one of the top top researchers in the world who had an outstanding reputation and who says he believes the disease is biological and he can find what's causing it. Isn't that enough to show some support? Even a single dollar because you don't fully understand it? Clearly the answer is no. But I find that disapointing because it ought to be enough for more than 800 patients to give a dollar.
Now let's address this mobile users business. I think this is a bit of nonesense. I just tried on my mobile and it works fine. No problem at all. I agree it needs to be easier for average public person who has only one spare minute, but where are the patients who are willing to go through hell to donate? Even if it didn't work on mobiles (maybe it doesn't on other makes to mine) then most people have access to a laptop, desktop or could even post a cheque, so they
could donate if it
really mattered to them. It's clearly not hell - it's half a dozen fields like address, and card number etc, pretty standard really. Then we look at how many donations there have been, 800 and something? Are these even unique people? My guess is no, so what 600? 500? patients showed their support?
Yeah, I still think patients need to take some responsibility for this. Just to reiterate, it shouldn't have to be patients - it's outrageous that we are in the position that we are in, but that is the reality of it - either we want it enough that we make it happen, or it doesn't. The questions people who are aware of the campaign needs to ask themselves is, i) have I looked at this properly cause I don't want to miss an important opportunity. ii) have I donated, even a dollar, if I have a dollar I can spare? iii) have I spread the word to those I can? iv) what else can I do to make this research happen - particularly increasing non-patient awarenes and getting them to donate?
Assuming someone else is going to make it happen, or being paralysed by the unfairness of it all, will result in a missed opportunity here.