The Lemming was going to do a micro-review of a website run by The Leukemia and Lymphoma Society. There's a little story behind that - I'll get to that at the end of this post.
I went to the LLS website, planning to take a look around, discuss what they're doing, and provide contact information. What I ran into was one of those outfits whose leaders are - I suppose "careful" would be a nice way to describe it.
Information About Leukemia, Lymphoma, and MyelomaI put together a short list of, in my opinion, useful online resources about leukemia, lymphoma and myeloma at the end of this post. Happily, the CDC, National Cancer Institute, and Mayo Clinic do not appear to be concerned about receiving publicity.
There's Caution - and There's Common SenseThe Leukemia and Lymphoma Society doesn't want just anybody linking to them. I've reformatted some of their legalese on their "Link Policy" page, to make it a bit more readable, but the words are copied exactly from the LLC website. I'd usually provide a link: But you'll see why I'm not doing that.
"...LLS expect persons or organizations that link to the Sites to provide factually correct information and to uphold high ethical standards in developing and presenting information. Permission to link to the Sites is limited to:
- "(i) active volunteers or participants in any event sponsored or benefiting LLS or its affiliates;
- "(ii) donors or sponsors with formal affiliations with LLS or its affiliates;
- "(iii) recipients of LLS grants or sponsorships using language outlined in the funding contracts;
- "(iv) organizations actively participating in blood cancer research or education or aid to blood cancer survivors or other activities in fulfillment of LLS mission;
- "(v) community non-profit organizations serving the needs of blood cancer survivors; or
- "(vi) individuals or organizations that, through the approval of LLS, are members of advocacy or grassroots fundraising groups.
The Lemming tries to "uphold high ethical standards in developing and presenting information." That's just enlightened self-interest. The way I see it, if you catch on that I'm bamboozling you: The Lemming has lost a reader.
I Don't Get It: But That's OkayI don't understand why The Leukemia and Lymphoma Society is so - cautious. But, I can take a hint. That section following "Permission to link to the Sites is limited to...." makes it clear that LLC desires only the online society of certain classes of persons.
I still don't get it. But if they don't want free publicity, that's fine by me.
Besides, I doubt that I qualify for inclusion in the exclusive circle outlined by points (i) through (vi)
And there may be a reasonable explanation for the LLC's desires.
Who's Got That Kind of Time?My hat's off to The Leukemia and Lymphoma Society: They permit those desiring the privilege of linking to them to make the request via email. After reading their declared preferences, I thought it possible that they would accept no correspondence that wasn't neatly typed and sent by the USPS in a #10 business envelope with enclosed #9 SASE (Self-Addressed Stamped Envelope).
Sure, I could submit an email, add a note to my tickler file, hope that the LLS got back to me: and if they didn't, take more time to decide whether to re-submit, or update my tickler file.
Does that sound like a lot of fuss and bother? I thought so.
Which is why the Lemming is writing this post instead.
What Started This?A friend of mine died of leukemia when she was 16. My mother-in-law died of something very similar a few years ago. Leukemia and Lymphoma are serious medical conditions - and I think it's a good idea to promote research that might lead to effective treatments.
So when a telemarketer called, yesterday, asking if I'd mail a little over a dozen letters for The Leukemia and Lymphoma Society, I declined. The arrangement sounded a bit too much like the 'bother your friends for us' proposals I get now and again.
So I offered to write about the organization, instead. The telemarketer kindly provided me with some contact information, including the LLC's URL. (You can find it easily enough, by using a search engine like Google - I hope my writing that isn't a violation of LLC's preferences.)
The LLC has an impressive website.
They're very interested in leukemia and lymphoma, it seems.
And they're very, very careful about what sort of person they associate with online.
I've now fulfilled my obligation, by writing this post.
The person I talked with yesterday gave me additional contact information, including a toll-free number and a mailing address: but under the circumstances, I'm not at all sure that The Leukemia and Lymphoma Society would desire that I divulge that information in a common public post such as this.
If you're interested in The Leukemia and Lymphoma Society: You can probably find them. I wish you well.
Leukemia, Lymphoma, and Myeloma: There is Information OnlineI checked, by the way: It really is "myeloma," not "melanoma," which is also bad - and another disorder.
If you're looking for information about leukemia and lymphoma, there are places online that do not shun publicity, and seem to know what they're doing: