1) I just happened to find out this last week about two organizations (well, one organization and one event) that deal with testicular cancer awareness. One is "Have a Ball" Foundation and another event is the "All Balls" golf day. So, um, yes, the men have "cutesy" names as well.
2) FYB had gross revenues of $201,836 in 2009. Of that, $111,403 was from direct gifts or grants. $90,433 was from sales of products. After expenses (including salaries…we'll get to that) the orgianziation had a net "profit" of $22,232. Based on the tax return, they don't appear to give money to other organizations but instead spend it on their own awareness campaign. Founder Leigh Hurst received a salary of $40,138. She also has loaned the organization $33,230 of her own money and as of 2009 was still owed $30,595. I don't think it's fair to say she's raising funds for her own good or atracting attention so she can get more speaker fees or engagements. All in all this is a tiny organization which had appropriately narrowed their focus to somewhere they feel they can make an impact.
3) It seems to me that some of the complaint is really that the "awareness" side is doing better raising money and getting attention than the research side is. Fair enough. BUT you can't be scolding the awareness side to do worse or telling them what they do isn't important enough. That is not productive. It's a lose/lose and everybody's frustrated. The folks advocating and raising money for research should state the case for research, find a method that has some appeal and go raise money! But don't bash the people who are doing it successfully. That doesn't make any sense. It's not an either/or situation and it seems if it's turned into one….well, it's research that may well continue loosing. And that's definitely not a good result. You don't become a winning team by calling the winning team a bunch of losers and asking them to quit. You become a winning team by….playing better.
4) I suspect most of the money going to FYB or Save the Tatas is not money that would have otherwise gone to research organizations. Again, it's not an either/orI suspect people liked the t-shirts and bought them. Period. There was no "should I buy this t-shirt or send $20 to American Cancer Society" analysis. I'd even bet many of the shirts were bought as gifts (I have at least 3 of the "offending" t-shirts and I didn't buy any of them
myself…I don't think.)
5) I took Anna's suggestion and read the NBCC 2020 White Paper. It's worth the read and delves into the argument for funding research exclusively. I still don't agree with everything they say or are doing, but I learned some things. I'd recommend reading it (just google NBCC 2020 White Paper and you'll find it…I can't add a link here).
6) I really worry a lot about some of the discussion that leans very close to "don't bother getting a mammogram or doing self-exams" and "early detection doesn't matter" attitude. That's harmful to so many on so many levels. Just because over-treatment MAY be a problem doesn't mean an early diagnosis isn't helpful. You have to be diagnosed before any treatment can be ruled in or out. And for folks like me, it made a big difference. I think those sorts of comments tend to diminish credibility on the issue that counts–the need for more research and more funding for research.
That's enough for now. For me, anyway.
Thanks to everyone who has commented and reached out. I'm not at all cutting off discussion if anyone feels the need for more. I just wanted to be sure to say thank you.

I thought of you last week as I was undergoing my annual mammogram (performed by an insensitive clog who treated my bosom like a recalcitrant side of beef, and okay, squished so hard I can still feel it) … if not for friends like you, it might be tempting to skip this annual discomfort.

That is not necessarily true. There is some mounting evidence that some cancers will never become life-threatening. Look at prostate cancer — most men who die of other causes have prostate cancer. It just grows so slowly that it will never kill them. And if it's not going to kill you, why treat it?

This is one of those questions that needs to be answered. Some of what we once thought to be true turns out not to be. That's why we need to concentrate on research, so we can make progress on eradicating this disease.

Katie

Perhaps I am the one who is semantic.

You say: "A breast cancer detected early CAN still come back as Stage IV cancer. That message is totally lost in the awareness discussion."

I say: "A breast cancer that is NOT detected WILL become stage IV cancer. Check yourself out."

Early Detection is not the only message – but its also not a bad message, nor a harmful one.

And I do suspect that awareness edges out research. For a perfect example, just look at what Komen funds – only 21% to research.

All you have to do is look at how detection rates have gone up, but mortality rates haven't gone down. That's not hiding behind science, that's a very simple (and scary) fact, one that is completely excluded from most conversations.

Awareness is an easy message, dying is a difficult one. Two percent of all research dollars go toward metastatic cancer research.

Unfortunately, we can't rest of "live and let live" for one very important reason — too many people are still dying.

Katie

Please stay with it.

Be aware, too, that Jill and I are working on this emotional part of things, and overall health, sanity and perspective @ SenchaLiving.com

Hope you'll find us there. We're following you and supporting your honesty and your story. Thank you.