[paula_w]

Are we wimping out here due to politics? Others aren't. Google has the PD gene and I'm sure he doesn't want to get it.

paula


http://www.huffingtonpost.com/katie-..._b_128920.html

[indigogo]

Paula,

You smoked me out on this one! I don't think we are wimping out; I'm just catching my breath before I jump in again. Katie Hood is part of the establishment (although on the leading edge); she has nothing to fear from politics; nor does Sergey Brin.

What Katie Hood is talking about is not real patient empowerment; how often does MJFF call for patient input? Rarely, and this is just another example of power controlling the agenda. All of the data is being collected by and for researchers and drug companies - patients have no control over anything beyond deciding to participate or not. The "empowered" patients who get the attention are wealthy and well connected.

Katie asks in her blog posting: "This empowerment carries over to philanthropic choices as well. How -- if at all -- would donors change their involvement if they knew they had a personal stake in the outcomes of their charitable gifts? What sort of accountability would they expect from the recipients of their contributions?"

I thought we were already expecting that our charitable gifts would benefit the recipients and that there was accountability. You mean they've really just been taking from everyone without meaning a word spoken in their fundraising campaigns, that money collected goes to research for a cure?

What we still need is our grassroots, patient-driven data base and a web platform for taking patient surveys. I'm still on track for that. What we lack in money and fame we can make up in sheer numbers!

[paula_w]

hey carey,

glad to see you! i've been sitting here watching the incredible turn of events about the economy and thinking angry thoughts like "why should we bail out all the greedy execs?' and then I started thinking about how rich the google co-founder is and no wonder they are collecting DNA.

it sure is tough staying positive and not angry these days. so i agree with you carey - and i am really glad i 'smoked you out'!

paula