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Saturday, July 14, 2007

How Adenoid Cystic Carcinoma community sites work in the Internet

The Internet has made it possible for people like me with a rare cancer to reach out to others that share the same situation and connect, which has benefited me and my family immensely. In order to do that, I have to have a computer, Internet access, and time to communicate. No problem for me and most people in the United States - public libraries make Internet access available to their patrons in nearly every community in the country. Another plus about using a blog to create a communication forum is - the software and hosting are free. Otherwise, the costs and labor are all mine, supported by whatever money I earn or am given. I am not a blogger that accepts advertisement, so my readers should know that all the content comes from me, and links to credible sources that I locate.

Now, if I wanted to create a web site and invite all ACC folks in to communicate as a group, I would need to set up an IP address, construct a functional web site that involves monthly hosting fees, and have even more time available to maintain the functionality. I have about 3 choices for funding my efforts: pay the costs involved (and there are many and often) out of my own pocket, get advertising to pay for the costs at the risk of bruising my credibility, or do more paperwork and become a 501(C)3 non-profit organization that still needs to go out and hunt down mission funding of some sort to keep the work going.

I bring this up because I received another anonymous message about The Rare Cancer Alliance yesterday, and how it isn't a non-profit, but run by an individual, who receives any donations made on the site. I mentioned The Rare Cancer Alliance and the Adenoid Cystic Carcinoma Organization International in July 12's post, and this person probably has an alert set up for anything with adenoid cystic carcinoma in the body of a web page (I know I do). Both organizations appear to this librarian to be worthy sites for anyone facing ACC and the questions one has after getting such a devastating diagnosis. Here is more information on who is behind each site, so my readers can make up their own minds about the credibility of the information resources.

The Rare Cancer Alliance is run by one of the strongest women I have met through the Internet -Sharon Lane. She is open about her own cancer and the mission of the site in her About Us: . There is a Make a Donation link, which takes you to Sharon's personal PayPal account - she is the sole monetary supporter of the site, but has a ton of folks helping others in the many rare cancer forums. This site covers many more rare cancers than just ACC. She could have signed up with pharmaceutical companies for advertising - even rare cancers can generate customers - but she works hard to keep the messages on the site clear and to the point. There are many sites run by individuals on the Internet that have donation links - readers don't have to donate, but if they choose to, the means are there to do it. Donations to the Rare Cancer Alliance are not U.S. income tax-deductible, because Ms. Lane is not a non-profit organization, even though she has the makings of one. I do not know why she has not become a non-profit - not my business. The fact that she isn't a non-profit does not muddy the messages given on her site, in my opinion. Because she is open and honest about carrying the hosting costs of the site on her own, I value the existence of the site more, not less. I am very glad I have her resource to turn to as an ACC patient, and will continue to support her efforts as a fellow volunteer. If I should choose to support her monetarily, it will be my business and no one else's. I do not encourage my readers to send any of their money anywhere, since most of us are doing all we can to pay off the doctor bills.

The Adenoid Cystic Carcinoma Organization International's About Us page shows a wider mission that matches its non-profit designation:
In addition to running a free email information group, they also fund ACC research. Their mission is only ACC. Checking their Six Degrees Badge located on their other site, the amount is over $10, 000 at this date. Donating money to this organization, I think, is U.S. income tax deductible. I would like to know a little more about where the $10k came from and where it went, as well as who are the board members of the organization, but since this is a 501(c)3 organization, their yearly income/expense figures should be open to me as a U.S. citizen, and all I have to do is ask. They probably have an annual report as well, somewhere. I am a member of the email group, and am very impressed by the leaders on that forum - they are tireless and expert in their handling of such very difficult subjects. I hopefully have helped others as they have helped me as we successfully trek together through the ACC minefields. I am very glad to have this resource to turn to, and will continue to support their efforts as a fellow volunteer. If I should choose to support AACOI monetarily, it will be my business and no one else's. I do not encourage my readers to send any of their money anywhere, since most of us are doing all we can to pay off the doctor bills.

I have no idea why I received the anonymous message about The Rare Cancer Alliance and Sharon Lane. I am amazed to find out that there might be turf wars in Cancerland - like there isn't enough crap to deal with just by having cancer, but as patients we have to hear warnings about our sources of community information support. I am a librarian, and it is my professional duty to evaluate sources of information as to their credibility for patients every day. Both The Rare Cancer Forum and The Adenoid Cystic Carcinoma Organization International appear to this librarian and cancer patient to be credible and worthwhile community information sources for anyone suffering or supporting someone that suffers with ACC. Neither of these sites (nor any on the Internet) should ever dictate anyone's health care, but information gathered should be discussed with one's own health care provider. I would not have linked to either of these sites if I thought they were not credible. If any site's credibility comes into question in the future, I will immediately delete my links to them.

If either of the sites wanted to make their donation list more open, they could create a link to public donations as Wikipedia has under its PayPal and Moneybookers links here: , but not all donors will want to be public. I know I wouldn't want my donations made public! No one's business but my own (which is why I rarely claim donations, in case the IRS is reading.)

Other individual information resource sites are out there - heck, they have been around since there were bulletin boards back in the late 80's, early 90's. Just because someone self-funds their site does NOT mean the information is less credible - they may be accomplishing the exact opposite by remaining independent of advertising limitations. And if they choose to add a "make a donation" link to said site, site visitors can either do it or ignore it, same as for non-profits - no big deal. Site visitors must always ask themselves - who wrote the information, what is the primary purpose of the website, and how accurate is the information presented.

Here are my recommendations for any site authors reading this. Both individually maintained and non-profit sites should make themselves as transparent as possible on their website, in order to gain credibility with their visitors. State openly where money comes from and where the donations will go. If you have a non-profit board, state their names - be proud of the fact you are a non-profit. If there is an executive director, site visitors should be able to see their name. Visitors should be able to contact any site's authors via phone, snail mail, or email for more information. There should be a date of last update plainly visible on the site.

I know there are other librarians that read this blog occasionally - please comment. If anyone wants to set me straight about any of the sites I list to, email me directly at teresa.hartman (at) I treasure your opinions.

1 comment:

Jeanne said...

Turf wars in Cancerland? Oh, yes, indeed there are. On the breast cancer turf in particular.

So you are saying that someone is sending you anonymous posts dissing one of the organizations? Pretty lame.

You are writing about a topic that I've had on my short list to blog about--blogs and advertising. When I first started my blog, one goal was to get the traffic numbers high enough that I could make money with ads, but having seen the kind of cancer-related sites out there that want to advertise on my blog, I have decided not to do it.

I think it would hurt my credibility. So now my blog only has links to Amazon for any books I mention and also Netflix ads on my Cancer Movies pages.

Good post. I agree with you.

The Assertive Cancer Patient

Who links to my website?