Jean, I didn't speak up about this because I wanted to know how I, Fiona, personally was going to feel better from this. And I'm sorry if it sounds like I don't want PWP and organizations to work together - in fact the opposite is true, and was the spirit with which I wrote about this. Because I think the time has come to have eyes wide open, because we are vulnerable, and we can be exploited, and we don't have time and money to waste. Getting distracted by entities who don't have our - and I say "our" - best interests at heart is something I question.

I realize this is all part of a basic challenge to the interface of the profit-making entities and their relationship to actually helping us. That is why I am sensitive to commercial entities throwing phrases around like "Cure." At this point, I don't think it's a term to be used loosely.

I think giving money to NWPF is fine. Especially if this marketing entity is saying words like "cure" as an attraction for many other disease communities as well, in this age of pervasive and undermining influence I really think it's worth looking at carefully. Getting people living with disease and organizations and industry people with integrity together to work on the problem is great. But I can't see that that justifies anything goes, or not at least evaluating each case on its merits. ANd I can't see the value of being so grateful for any kind of handout from industry that we don't look at the unspoken costs and implications with clarity.

Fiona,

I respect you & your opinions! And it was NEVER my intent to suggest you didn't want pwp & orgs to work together.

It's true that I have a tendency to do things without fully considering all the ramifications. Maybe in the future I'll learn something about this group that will make me reconsider - but for now I have no regrets about my choice.

Hi again. The following is what Bill Bell wrote to me this morning, so that his voice can be heard. I follow it with my reply, altho not with the intention of having the last word, just for context....

Thanks Fiona and good morning.

The thread has great points. I struggled with some of the same issues that have been mentioned. I actually contacted a couple friends in the community to get their thoughts on the pros and cons of participating.

I will mention one take on all this. Your thought of direct support for these activities made me think. We have an interesting business model here at NWPF. We try and get as many people as possible to receive information, materials and resources from us, all free of charge, for the length of our relationship. I look at each $25 received as funding for the materials we try and put in people's hands each day. And in as many hands as possible. As all orgs do. Maybe that is direct support for the PWP. That's where the "profit" is in all this.

My greatest frustration is finding those that have become reclusive and unaware of all the services now provided by each and all of the orgs and the PWP community. Maybe better marketing or community insights will help connect the dots between PWP and the resources available.

I have noticed with some of the emails I've received, in reply to the original email sent, that many in the community get very excited to get the chance to participate. Whether it's this survey, a conference, a registry or clinical trial. I don't know if it gives a sense of empowerment over the PD, or joining part of a larger community or .... I don't know. It's an excitement over the opportunity to participate.

Love the discussion, thoughtfulness and thanks so much for all you do. It's truly appreciated.

All my best.
Bill


Hi Bill,
First of all, I am going to send you a donation right now, because I never have. And adding up how much you would get from this effort - over $17K probably, right? - well, in my non-profit experience that's not to be sneezed at. I would like to think that the marketing company will in fact increase traffic ultimately to your site, or actually cull community insights, not just about how they would spend their medical consumer dollars, but insights that aren't necessarily beneficial to the interests behind the products that are being researched.

And I am glad that people can feel hope and inclusion in something for the future. I just have been feeling very wary because I have participated in focus groups, and market research groups before, and I know the language. They talk about empowerment, and consumer choice, etc., but often times its a choice between Coke and Pepsi, and what we really could use is uncontaminated drinking water, and that never even comes up.

I think your comments are very valuable. Would you consider allowing me to post them in the NT thread?
Fiona

Thank you Fiona! We have all learned something from your actions. Thanks to Bill too!

paula