Heading for Orlando
— National Psoriasis Foundation 2008 Annual Conference, August 15 &
16
(for details at the Foundation’s site,
click here)
Workshop Session: “The Future of Psoriasis Advocacy on the Internet”
The National Psoriasis Foundation has been doing an
annual meeting forever. It’s probably the largest congregation of
psoriatics in the United States. ‘The Meeting’ gives a flaker like me a
weirdly warm feeling. Psoriasis is something most of us like to keep as
private as possible, yet here we are for a couple of days surrounded by
people so like us it’s uncanny.
For me, what’s so fascinating about the experience
is how quickly and comfortably we fall into ‘normalcy.’ Before you know
it, at a social function, or a meal, or between workshop sessions we are
talking to each other like people who don’t have psoriasis. It’s as
though our shared affliction cancels itself out. And it feels like this
even when we’re talking about psoriasis, which we almost always are
during ‘The Meeting.’ I really shouldn’t be surprised. It seems anything
that can be shared — good things, bad things — can compel people to form
groups in which they feel better than they do in the population at
large.
A special reason I’m excited about this year’s
meeting is my being part of a special session with the working title
“The Future of Psoriasis Advocacy on the Internet” (Saturday, August 16,
in the ‘Cloister’ room, Buena Vista Palace Hotel, 10:30-11:30am). This
is a roundtable session involving six people representing six “advocacy”
psoriasis web sites. Here’s the lineup (in alphabetical order by last
name)
* These people have been interviewed inside
FlakeHQ, click here for the Interviews Directory.
During the session, the roundtable will engage in
conversation about possible ways psoriasis web sites might collaborate
to more effectively disseminate information about the disease and
current treatments AND propel efforts to find a cure and equalize the
availability of effective treatments throughout the world.
Sounds like a high-minded enterprise and it is, but
the Web makes it doable if a significant number of psoriasis web sites
collaborate on key themes and events. There is no reason that small web
sites, like four of the six represented on this roundtable, can’t become
significantly more influential than the sum of their parts by working
collaboratively on specific projects. At least, that’s what we intend to
explore while we’re in Orlando, at ‘The Meeting.’
I hope every registrant who operates a website,
blog, wiki or email list about psoriasis will attend the roundtable
session on Saturday morning. And for those of you who can’t come but
would like to keep abreast of what becomes of this, send me an
email and I’ll add you to the
list. Also, check back here over the next six weeks. As the six of us
plan the roundtable presentation in Orlando, I’ll add specifics here.
Keep an eye out for FLASH messages on the FlakeHQ home page.
Why Does Health Care Cost So Much?
If you're concerned about the rising costs of health care in the
U.S., you should
read this article before it goes away. The link takes you
to the AARP Magazine online, specifically to the article whose title
I'm using for this piece in the Briefing. The advent of biologic
drugs really raised the already high cost of therapies available to
treat psoriasis, and meds are only one part of the cost-of-care
picture. It serves us all to be aware of the issues affecting our
health care costs and this article summarizes many of them.
Flaker
Creativity
In Flaker Creativity this update,
Sherry S. adds a
new ekphrastic, "Red Beach." I've finished "post-scripting"
the last two chapters of
Flake: Confessions of a Psoriatic, and a short story, "Byron
& Talia." Enjoy!
